(Thanks to Sue for allowing Health Rising to repost her poignant blog on a frustrating and common problem for people with ME/CFS/FM and their families: when social interactions – even with loved ones – turn exhausting.)
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| I love my extended family – but a weekend together is a marathon for me! |
I’ve been thinking about how exactly to describe this bizarre thing where just being with other people can totally wipe me out…I guess “social exhaustion” is as good as any description, though it’s still not quite accurate.
I experienced this horrible, bizarre aspect of ME/CFS again last weekend. My mom and her husband came for the weekend. I had invited them – in fact, encouraged them – to come, and I really enjoyed having them here. We had a great weekend – my sons were both home, we watched old home movies, played games, had some great meals, and talked and laughed a lot. All in all, it was a lovely weekend with family.
Except…that I was totally exhausted by dinnertime Saturday – wiped out, worn out, barely keeping my head up, frazzled, and wrecked. I tried to be polite for a while. I really wanted to play a game while everyone was here (I love games!) or watch more of our home movies, but I was just…so…tired. I finally gave up at 9 pm and went upstairs to bed, while everyone else (including my kids!) stayed up well past midnight.
Getting up to my room and into bed was such a huge relief! Lying down flat in a completely quiet room and reading my book felt so good. I think my mom was a bit put out the next morning, when she asked me why my light was still on an hour later. Even after 13 years, she tends to take it personally when I need a break or can’t manage being with everyone any more. I don’t blame her – it’s a hard thing for anyone to understand, how being with people you love could be harmful.
It feels like some of it is energy depletion – no different than doing too much physically – and some of it is over-stimulation. The noise of being with other people, the chaos of a large group (or even a small group), trying to keep track of conversations going on – it all results in just too much for my mind to process. Even a quiet, brief gathering like my book group has this effect on me. How can sitting in my neighbor’s comfortable living room discussing a good book for 2 hours with friends be too much for me? I don’t know, but when I get home from book group, I am feeling so over-stimulated (“wired but tired”) that I have to take a half Ambien in order to get to sleep (which I rarely need any more). I needed to read for awhile this weekend after I went up to bed – to give my brain some time to calm down and recover, to soothe my frazzled nerves..
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| My beloved neighborhood book group with author Rachel Simon |
I think this is part of why I love our camping trips so much and find being outdoors so rejuvenating. Having just the four of us together, with no phone or TV or computer, is soothing, quiet, and easy for me to manage. The natural world – clouds, trees and flowers, breezes – is naturally soothing and a balm from the usually over-stimulating modern world.
Energy-wise, my body reacts to being in a social gathering much the same way it reacts to physical exertion – too much and I crash. It’s over-exertion of a different kind, but with the same effect.
All of this is hard for me to accept because I am naturally a very social person. I love being with people, talking with friends or being with family. I had a lot of friends in high school, was president of my sorority in college, and quite the party girl throughout school and into my 20’s. I was always the one to organize an outing or a party, the one to want to stay out later, invite more people, keep going. I used to love to host gatherings at our house. Even now, it’s hard to accept that something I enjoy so much could have such a negative effect on me.
Fortunately, with all of the improvements I’ve made over the past 10 years or so, my ability to tolerate social situations has improved, too. I love seeing my friends or going to my book group or, yes, spending time with my family. But my body tells me when it is too much. I usually limit myself to one major social event per week (and yes, going to a book group counts as “major”!). Sometimes, I can manage a second social outing, especially if it’s just being with a couple of close friends. I know when I’ve hit my limits – and my close friends can tell, too! I’ve been told I visibly droop when I’ve had too much social interaction, sliding down further and further into my seat.
When I’ve had too much – like happened this weekend – it is such a relief when I am finally by myself, in quiet solitude. Just a normal Sunday wipes me out this way, with my college son and father-in-law coming over for dinner and everyone home from school and work. I love having everyone together, but by the end of the day, I’ve had enough. Monday morning – waking up to a quiet house, all alone – is like a soothing balm to my exhausted mind and body. I can recover from social exhaustion pretty well now, but I need that soothing quiet time with no stimulation. It’s vital to my well-being.
Is it the same for you? Do you get over-stimulated and wiped out even from the most pleasant social interactions? How do you cope?
For Sue, ME/CFS is a family affair. She’s had ME/CFS since March 2002 and her 19-year old and 16-year old sons also have it. (Plus her older son has Lyme disease (and two other tick-borne infections)). She’s produced hundreds of blogs since 2006 about her families efforts at living fully despite the chronic illnesses they face in her Learning to Live With CFS blog.
- Those Family Get-Together’s – are they worth it? Let us know in the Family Get-Together’s Poll on the Health Rising Forums
Absolutely. I went to a party last night for an hour and a half, and it was really fun–I saw friends I hadn’t seen for years. But when I went to bed, it took an extra hour and an extra Ambien to go to sleep. Any kind of excitement in the evening does that to me.
I not surprised your family isn’t more understanding about this. I’ve had this for 21 years, and my mother also has it, and some people in my family still don’t get it.
Glad you were able to get out and enjoy a little time with friends, Laurel. We pay a price for these social events, but it is often worth it for the enjoyment and rare opportunity to be with friends. Hope you recover quickly!
Sue
I agree and identify with all above and the comments below. After 13 years myself being disabled from so many auto-immune disorders, I want it to stop! When can I have a “normal” life for the small remainder of time I have. I want to scream and stop that it is not fair. Why are we chosen to carry this burden? Why must some of us suffer from severe chronic pain day in and out? Loss of friends, the few left I have I can barely keep because even the idea of an e-mail is exhausting. What do I have to say? The same things the plague my life every day? The new and difficult diagnoses that I have? I have nothing else to discuss but the small life I have that is all pain, fatigue, anger, resentment, frustration, self pity, and hopelessness. Gentle hugs to all
A big – and gentle -hug back from me. Just discovered Sue’s great blog. I had a weekend away last week with the parish church – a very rare treat as I do not drive. A kind couple took me there and back. Social breakfast at 8am was a NO NO, but managed most of the rest and talked to about 30 people. Did not sleep well while there and was glad to get home to my flat and solitude. But it caught up with me during the week by Thursday, so having a quiet weekend. I started taking “Sizzling Minerals” by Simply Naturals a few months ago and I think this is beginning to help on the nutritions side, but as we know, there is much more to this condition than nutrition. Bless you all xx
Oh yes!
I experience something very similar. I call my experience sensory overload. I find it one of the most frustrating things about living with this illness. I only allow myself to to out into the world and enjoy myself a few times a week. Usually during the week I turn off the TV and have all the blinds and curtains closed. I do my best to relax and avoid noise and light over stimulation. Sometimes I am alright during my social outings and sometimes I am not. I can never tell how my body will react. Last week I went out for dinner with my significant other and he put out a general invitation online to his exercise friends and like 20 people showed up. It was my worst nightmare. 10 different conversations going on around me plus background restaurant noise. I felt the blood drain from my body, got nauseous, dizzy and became completely disorientated. I just slid down my chair and hoped the meal would arrive fast so I could leave. Usually how I cope with this kind of situation is to take an ativan. It does not help with the actual sensory overload but it does help calm the anxiety I experience when I have these episodes. Anxiety makes everything worse. I have also used earplugs in restaurants and in other social settings. If I can leave the situation I will but in some social situations that I find myself in leaving is not an option.
I also find outdoor settings are usually a good experience. There have been times when I seriously have considered going to the emergency during a bad flare-up but instead went to the beach. For some reason I usually feel better. Do not know if it is the fresh air, sunshine, relaxing sound of the ocean or maybe the fact that I might be experiencing sick building syndrome. Wish I could spend everyday outside near water. Too cold most of the year where I live.
I find the beach very soothing, too – the rhythmic sound of the waves, the fresh salt air – ahhhh! Very rejuvenating.
That dinner with so many people sounds awful!!
Sue
I can relate! After 21 years, I still struggle with putting my needs before trying to please everyone else. I know I should be taking care of my own self first, but as more relationships drift away, or I gently pull myself back from social obligations, a part of me panics, and I try to push myself some more. It’s getting easier to let go. But it kills me to say no to my brother, mother, father, husband and adult children over and over. Most understand and a few are just resigned to the loss of time together. I exist in a dark, cold, quiet house. I am easily overwhelmed and overstimulated. I got so anxious I missed Christmas with Dad, and it really hurt him. I told him I was sick, which I am with CFS, Fibro, Interstitial Cystitis and chronic pain. But I saw a photo of him alone at the gathering. He was lost without me there. Just the emotional expenditure at seeing my dad that way put me into another flare. Becoming emotionally upset might as well be a hard marathon. It wipes me out. This is a lonely, exhausting existence. Hugs to all.
Yes! Well-stated and described. Been like this all my life. http://www.fms-help.com
I definitely experience “social exhaustion”. Getting together with loved ones (family and friends) is draining but I have learned to pace myself so I enjoy more time with them than I have in the past. I have been a very social person all of my life until my CFS put me on my back in June 2012. Up until a year ago, I could not handle any social interactions that were larger than four people. Now when I do attend a party or family gathering, I rest a few days before and a few days after the event. I limit the amount of time I am with many people and I also remove myself a few times to go outside and breathe some fresh air. I no longer get angry with my body as I did in the beginning of my illness; I accept what I can do rather than what I cannot do. I am grateful to have about 60 to 70% of my energy level back and I am looking forward to gaining more. Taking care of my body and listening to its signals are very important and are top priority to me. All of my loved ones don’t truly understand but it is not necessary for them to. I love them all the same.
Good point, Amy! I forgot to mention how important it is to rest up BEFORE a social event – it really helps. On the days when I have book group in the evening, I try to take it easy and rest a lot the rest of the day.
And you are right – no one can fully understand this unless they live it – and we love them just the same!
Sue
This is so true. Both my husband and I have FM and I have CFS/ME/MCS, etc. He is by nature rather introverted, so doesn’t particularly mind staying home quiet on his computer, in his LazyBoy chair, reading, watching TV, etc. Social events, conversations, stimulation are very stressful for him, so he avoids them without too much regret.
I am more outgoing and need social interaction for all the benefits it brings – normally. But since I got sick with CFS/ME in 1987, noise, motion, confusion, conversations, laughter, concentration bring me down in less than 1 hour. Then I lose my ability to talk, walk, smile and almost breathe. I have to escape, go off by myself and try to focus my mind and find some peace. Just writing about this now brings on almost the same effect. It is so very stressful.
I have missed almost every life event that happened in my family for the past 28 years. Weddings, anniversaries, class reunions, trips, everything. I don’t even want to know what family and friends are doing or where they are going anymore. It is too depressing to be left at home alone.
I have 6 grandchildren, ages 19 – 27, who have never known me as a “normal” person. My family, in general, has stopped including me in anything, because they know I will probably not make it, or will stay briefly and escape. They rarely call or come for a visit. This is the most isolating, depressing situation I’ve ever experienced (I’m 76). It takes enormous strength to just get up every day and face this situation.
We live in a very active retirement community, where there are dozens of activities every week. The residents are “family” to us. We are unable to participate in 90% of the activities which are offered. Residents with cancer, heart disease, serious illnesses are “weller” than we are. Even the blind residents are able to participate more. My husband isn’t bothered by this, but I am, which makes it even harder for me, because he is not too sympathetic to my needs.
I rarely post messages on forums, and I thank you for this really great resource, Cort. I do follow the medical news and I do my own research to present to my doctors, who often don’t know anything about CFS/ME. Most are aware of FM, so I can get treatment for some symptoms.
We are not alone. We are a silent group, except online where our voices are so powerful. Thanks so much for listening. I have hope for the future, and believe progress is now being made toward an answer or answers to this debilitating illness.
Sheila –
I’m sorry to hear you are feeling so isolated and left out. I know what you mean. I read in the paper each weekend about all the fun things going on and sometimes it gets me down that I can’t manage much of it – I miss going to festivals or outdoor concerts, things like that. Plus I feel bad that we almost never make it to my husband’s social events for work.
Thanks for taking the time to leave a comment and express your feelings – you are right – we are a powerful group online!
Sue
Oh, yes. I suffer from this too. I love get togethers (I miss people) but they totally wipe me out. I love the ‘wired & tired’ phrase you used; I’ll steal that if you don’t mind. It so hard telling loved ones that whilst you haven’t had enough of them, you’ve had enough of company and need to rest. Just yesterday I had to send my boyfriend home – who was meant to be staying the w’end with me – as even him being in my apartment as I rested would be tiring.
Steal away, Suzanne! I didn’t actually come up with that one – I’ve heard it before – perfect for when we’ve gone past our limits, right?
Thanks for taking the time to comment and share your experiences.
Sue
“as even him being in my apartment as I rested would be tiring”
YES! Thank you Suzanne – I’m not alone! I too cannot fully rest when someone is in my space.
Thank you, Amy – ‘I accept what I can do rather than what I cannot do’ Something I’ll definitely remember.
Yes, I’m the same with people, but I’m aware very quickly of when I’ve had enough – I start to feel irritated and soon become irritable! Right – time to remove myself, before I say something which might upset someone!
If I’m having a conversation with someone and they are talking really fast for a long time I just can’t keep up. That would make me very tired for a while. I’m lucky it’s got better for me. It’s better if you can maybe sit with the TV on and when you need those few moments rest then atleast they can watch TV while they wait. But when there are lots of different talking going on then that can be more tiring too. I haven’t got a clue what people are saying sometimes. You just zone out as well you haven’t got a clue what on earth they have just said, you can’t remember what you have just said. What was the conversation about again? I feel like the mental part of having a conversation like if I had company for a long time, it is so hard. And to take in what the persons saying. You have something you want to say,you start to talk the first part of the first topic. Part way through you think of something else you wanna talk about and then think I need to say that now of I will forget. You go from 1st part topic1 to 1st part topic 2. Then you forget the first thing and try and remember then you can’t remember the other topic. Sometimes when you want to talk it’s easier not to bother when your brains all scrambled.
It’s hard for me to have decent conversations. When I write I can take the time to think about what im saying. In conversation talking should just flow. I wouldn’t say my talking flows. And when I write I can look back and see what I was writing about.
When I have company I often forget what I was even wanting to say and when they leave I remember. It’s so hard to get out the things you want to say. Like your thoughts slip through your hands like sand a lot of the time. Your mind just goes blank. You try and get your thoughts together and your words come out wrong. If you’re around people that may not understand as well being conscious of the way you look to them, that can make you feel tired too if you are worried about how they see you. And you are trying to be “normal”
A few weeks ago I went to a party for a few hours. I even took my ear plugs and went for a sleep upstairs for about an hour part way through. You do worry about different people judging you, even if they aren’t you still sometimes worry about it.
But when I was most sick I couldn’t speak or even whisper so I certainly couldn’t deal with people back then. When the noise of eye lashes brushing against a pillow was pain. We would write on paper to talk. I used toilet paper before then because I couldn’t ask for paper…My brains still abit all over the place…and you feel like your making it up but you know your not
Jess, I completely know the feeling of ‘butterfly brain’ – flitting from point to point as you think of it, and not completely finishing one point. Like you, I much prefer to write what I’m thinking so that I can set it all out logically.
I also agree with how difficult it is when people talk too quickly. There are certain people whose chatter can give me a headache within 10 minutes. The conversation might only last 15 minutes but the headache lasts 2-3 hours. I am learning to recognise such people and to avoid them. I am not sure if the problem is their speed of talking (making it a concentration headache) or the tone/depth of their voice (making it a noise issue – as I have problem with sounds in a certain range). They can be very nice people, but the headache is not worth the getting to know them.
Wow, you described this so well. For those of us who are considered moderately ill, people don’t understand when they see us out being “on” and having fun, but this is exactly how I describe how I try to pace myself, even down to how friend’s spot me fading: “I usually limit myself to one major social event per week (and yes, going to a book group counts as “major”!). Sometimes, I can manage a second social outing, especially if it’s just being with a couple of close friends I know when I’ve hit my limits – and my close friends can tell, too!”
Yes, Tara, those close to us learn to recognize the signs! My mom says she can tell from my voice when she calls if I am having a bad day illness-wise.
You are right, too, about the difficulty of appearing well when we are out and about – that’s one of paradoxes of this illness – people only see us when we are well enough to be out; when we are at our worst, we don’t leave the house!
Sue
Yes – which is a shame as it was once a joy – I’m for ever leaving social events early as I’m starting to dip and know that I’ll pay the next day. But, I do find telephone calls the most taxing … after 8pm I can’t handle them at all.
Rosemary –
I am the same with phone calls! I really hate talking on the phone now – amazing how much it can tire me out. 7 pm is my limit – after 7, I am lying on the couch and letting my husband answer the phone!
Sue
Sue,
Phones! I breath a sigh of relief when there’s a hang-up or there are no messages. I NEVER answer my phone and let it go to voice. I’ve tried to explain that the two-way effort of a phone conversation is exhausting but no one can understand. I even have trouble understanding.
My motto is Don’t call me, I won’t call you.
You are the first person I know to echo what I’ve experience regarding the phone. Thank you!
For some reason phone conversations seem particularly exhausting to me as well.
Love the motto, Judith! My life motto is Better Late Than Never because I am always behind on everything! lol
I, too, let most calls go to voicemail, unless I know it’s my son or father-in-law or husband – someone just calling to tell me something quickly!
I have a goal to call my mom once a week to try to stay in touch better, but I honestly dread making that call and often put it off – nothing to do with her, I just don’t like talking on the phone anymore.
I’m actually OK with the trend of people texting more and calling less!
Sue
Me too! Wow! I thought I was the only one who found talking on the phone really exhausting. I thought there was just something strange going on with me. Good to know I’m not alone.
For many of us I think the term “social destruction” is more accurate. I have been ill for 13 years, a few years ago I could still be somewhat social. Now a 10 minute phone conversation is exhausting and simply not enjoyable after that. I used to have friends, not any more. I used to enjoy short (in duration) family gatherings, not any more. I feel very isolated and abandoned. Most well people just don’t understand and soon stop trying to be social with me because I cannot do my share of socializing that is required to maintain friends.
It has helped me to learn to forgive myself for my shortcomings that I cannot help. So I have learned to live with myself better but it is a very isolated existence.
Tom – I have noticed over my 13 years with ME/CFS that people who get worse over time often have underlying infections – once those are diagnosed and treated, most people improve considerably. It could be tick-borne infections (as was the case with our son) or some of the many common viruses that become reactivated in us due to our immune dysfunction.
In any case, you might consider getting tested for the common virus culprits and evaluated by a Lyme specialist for tick infections (because the tests only catch about 60% of the cases). It has made such a huge difference for my son! He is now in college, living in an apartment with friends, with a very active social life – he still has plenty of challenges and isn’t cured of those infections yet, but he is SO much better and able to live his life.
Good luck –
Sue
Hi there, great article and can absolutely relate. This is just my experience and in no way does it minimise the suffering of those with ME. I just wish I’d have read a post like the one I’m about to give! I searched decades for answers and never came across this as a potential source of fatigue.
I’m a psychotherapist and hit a major burnout in 2016 which I am still not totally recovered from. Two separate doctors diagnosed me with CFS but I didn’t feel the symptoms were as aligned.
Fast forward several years and I’ve been correctly diagnosed as being autistic – the burnout was ‘autistic fatigue’ caused by exceeding my natural capacity for decades. It tends to hit middle aged women where we just can’t go on anymore.
I only say this as thousands of women are misdiagnosed and overlooked because the DSM diagnostic criteria is gender imbalanced when it comes to autism.
Hell, I missed it in myself and I am a clinician!! My close friend has CFS and my best friend has Fibromyalgia. Our symptoms are practically identical.
I found this a very useful resource, and if it helps one person, yeay!
https://taniaannmarshall.wordpress.com/2013/03/26/moving-towards-a-female-profile-the-unique-characteristics-abilities-and-talents-of-asperwomen-adult-women-with-asperger-syndrome/
Healing wishes to all.
This is very true! Add in the fact that I am an Introvert (so get my energy from being alone and lose energy when I am with people) and Social Exhaustion is very real.
When I am with people the adrenaline kicks in and I cannot tell when I have done too much. It is only when I start snapping at people or burst into tears over something minor (like being taken out for sushi and being unable to see anything I’m prepared to eat) that I realise I have done way too much. My preferred way of resting then would be to sit in a comfortable armchair with my feet up, reading a simple book, but that’s impossible in a crowded house.
Luckily I am a ‘walking wounded’ and I can do a reasonable amount before this kicks in, but because I live in a different country from my family, when we see each other it is for extended periods. Visitors have learnt that they need to help with meal preparation, as the social interaction takes all the energy I have available. They also know that I can only take them out sightseeing every second day. When I stay with them, they are learning that I might have to go off and spend some time alone.
Diane –
It is the same for me – none of my extended family live in our state, so we only see family when we are spending a weekend (or longer) together, which is extra challenging!
The “walking wounded” – ha ha – I like that. That would be me, too.
Sue
I’m blown away to hear so many have similar issues. Diane I am exactly the same in the few times a month I get out to socialize… “When I am with people the adrenaline kicks in and I cannot tell when I have done too much”. Once I get out I’m usually good for a few hours but then I hit a wall soon as I relax on the way home. And The next few days will be extra hellish for me!!
Wow, Sue. You hit the nail on the head. Thank you for summing up exactly what I go through. I cannot even ” explain it” to myself. Let alone trying to explain it to friends and family. Even past colleagues in the medical field. And it does not get better. I am just the ” you dont look sick” friend, past colleague, family member. Social gatherings, having family visit, are like the track, cross country races and triathlons I used to do: get it over with and mark mark it off the list; with the same after effect of minimizing how grueling it was in the semi euphoric ” achievement” phase. In which I minimize the truth of the extreme physical-mental exhaustion and lack of joy I feel in my ” accomplishment” the social gathering took upon me. In which gloss it over and tell myself and them ” yes, i want to do it again soon. Let’s even plan a trip!” Which I know is the worst thing possible for me most of the time but it is nice to pretend like I fit in again. The unrealistic ” plans” makes others happy. It gives me hope too that perhaps they wont quietly fade away like most other friends, family, past colleagues of us chronic m.e/ cfs ‘you-don’t-look-sick’ people. Thank you, Sue. And thank you, Cort, for this platforn and the others you created.
You described the challenges so well, Kelly!
In my case, I do know my limits…but my mother usually won’t accept them – ha ha. She still wants to plan big family trips. I do my best to keep up and try to stick to my routines – like my afternoon nap (which is sacred!) and eating at regular times.
It’s a balancing act – I do enjoy time with my family, though these multi-day things are really challenging.
Thanks for taking the time to comment.
Sue
I think I win the prize for a lack of understanding and compassion re social situations!
I made the mistake of going to an evening Bar Mitzvah party. I had done well in the a.m. at synagogue for the ceremony and luncheon afterward.
The bar mitzvah boys are my niece’s nephews. They are the sons of her half brother.
I didn’t know what a teenage disco was: the loudest noise possible and strobe lights. I’ve never encountered this type of stimulation in the twenty years I’ve had CFS. I had to get out; I felt an instant crash coming. The noise and lights were an assault. It was frightening.
I had to leave but was afraid to drive alone. My niece came with me.
I didn’t know her half brother had a speech prepared that included her. He claimed that I ruined the party by taking her with me. She couldn’t participate in this speech. She knew nothing about it.
The next day the half brother sent me a hateful email telling me he never wanted to have anything to do with me. This also ended my relationship with my sil who I’ve known for fifty years. She was married to my late brother and is my niece’s mother.
The malevolent half brother is a psychiatrist!
Oh, Andrea, I’m sorry to hear you had such an awful experience. Hopefully, your family was just focused on their special event and will soon realize it wasn’t your fault.
The disco setting sounds like torture!
Sue
Sue, that was two years ago. It will never be resolved; it’s a done deal.
My niece said the next day her half brother screamed at her for an hour. Her mother and stepfather didn’t want to get involved.
The only people who came to her defense were the thirteen year old bar mitzvah boys!
Now when she comes in I don’t even drive her the two miles to her half brother’s.
I remember reading the email “malevolent brother” sent me to my former therapist. He was shocked and said he hoped I never had to see this man again. I haven’t heard from my sil for over two years. We had a forty year relationship. She isn’t angry; she just favors her son in everything.
I hate to never say never but in this situation I think it is.
Sue, that was two years ago. It will never be resolved; it’s a done deal.
My niece said the next day her half brother screamed at her for an hour. Her mother and stepfather didn’t want to get involved.
The only people who came to her defense were the thirteen year old bar mitzvah boys!
Now when she comes in I don’t even drive her the two miles to her half brother’s.
I remember reading the email “malevolent brother” sent me to my former therapist. He was shocked and said he hoped I never had to see this man again. I haven’t heard from my sil for over two years. We had a forty year relationship. She isn’t angry; she just favors her son in everything.
I hate to never say never but in this situation I think it is.
Andrea,
Oh I am so sorry that bar mitzvah boy reacted so selfishly! And the sister in law.
Healthy people assume too much — but when their time comes, they will expect full sympathy. You did not deserve that response at all, but you got it. Your niece was sweet to respond to your need. This is the damage inflicted by a nation, a world, that disregards this disease.
Sarah
Andrea, sorry to hear about your miserable experience. Bar and Bat Mitzvahs can be extremely stressful to everyone. The last one I went to ended up with father of the Bat Mitzvah disowning his parents over something incredibly minor.
I’m going to a reunion of my husband’s high school friends this coming weekend and I don’t know how I’ll make it through a whole day on Saturday. Maybe I can retreat to the car with a book every so often for an hour of rest.
The other issue with social events is the food – I have too many food allergies. Wheat, dairy, eggs, corn, quinoa, citrus. Breakfast is just about impossible. I find the whole thing embarrassing – I hate needing special foods, but I get pretty sick if I’m not 100% careful.
This illness (CFS) stinks on so many levels.
Cort, trying to assign my Amazon Smile to Health Rising but cannot find it. Any hints?
I just wish I could be myself. Be understood. Not get lectures on getting out more and being more active. I just went through a major illness on top of Fibromyalgia, my kidneys shut down and ended up in ICU, my heart quit a few times, so I am in a major flare. And EVERYONE is an expert! My Dr said it may take 3 years to turn this around and my kidneys keep messing up which keeps my fatigue levels low, all over a Doctor’s incompetence. Anyway I keep trying to play the hostess part, but it is exhausting. My Father died and I had to be the “strong” one and organize because I have always been the family crisis management. I just want to step down. Or go into witness protection. For being the “strong” one I sure let them bully me into action by their inactivity. And when I have a weak moment, they say I should be over it by now. Yeah, Witness protection from these leachs, love them, but, just but.
Sorry you have been through so much lately, Deborah. I understand about being the one to organize things – that was me, too, though I’ve had to step back a bit. One way I stay involved but within my limits is to take photos at family events – it keeps me involved but on the sidelines…and my family LOVES all the photos and year-end DVDs I make for them!
Love the line about Witness Protection!
Sue
Thank you guys so much. I have Chiari Malformation and Fibromyalgia and a lot of other diagnoses. This really helped me understand that I’m not going crazy. My roommate says I live like a witch. My best friend thinks I’m depressed. My brother always asked if I’m bored being in the house ? alone all the time. The world ? just seems so loud to me now. I shut down all my social media accounts because they were causing me stress. And stress equals flare ups
Witness protection! I like that idea!
It is encouraging to read that others share in the same experiences. My doctor, who also has this disease, says that disappointing others is a reality for us – we have to learn to live with it. So true, and so difficult to do.
I do not get out to social functions yet, but have lots of company – which, as has been stated, is both good and bad. I find it takes me hours to wind down after a houseful of visitors. Quiet days are golden and I would like to learn how to preserve them more. As a mother, and former “responsible” one, I find this hard to do, but I am learning – ‘no’ is an actual word, and I can use it.
The hard part is how do we bridge the ideal of self (a social, caretaking soul) with this new reality?
You are right – it is especially hard as a mother!
And after a lifetime of being an active, very social, very independent person, it takes some time to learn how to say no – and to learn to ask for help, too.
I have found that when I am worse off and unable to get out, social media helps immensely – both to connect with others who understand (whom I would never meet otherwise) and also to stay in touch with healthy friends and family.
Sue
Sue, I agree about social media helping when you don’t have the energy to get out and see people. It’s good to connect that little bit. And I can do Facebook without getting wiped out.
I was just thinking about this. I’ve had to limit my social life recently as I can’t manage lengthy social engagements any more, where I’m expected to socialise for an extended time. I’m ok for shorter periods but if there isn’t a natural break in the interaction, I zone out, like I’m operating past my natural sleep time, and need to break or rest or travel.
Yes, Harry…”zone out” is a good description! I get to the point where I am just thinking about getting home and lying down and no longer a part of the conversation.
It’s past midnight and I’m actually reading this post to calm down after an over-stimulation : a unplanned phone call with a friend that lasted far too much… I really enjoyed it but it totally disrupted my routine, dinner much later, watching a bit of tv to cool down and still not feeling like going to sleep though totally exhausted…
I get that way, too, Rosa. I avoid talking on the phone, but if I have to call someone, I plan the timing very carefully to go along with my energy levels and not disrupt my normal routines for resting, eating, etc. Hope you were finally able to get some sleep!
I can so totally relate. Just having a friend visit sends me into a tailspin after a very short time. We take two vacations a year, both by the water and away from tv and the sicisl medis. We just enjoy the quiet of the ocean. I could do that forever.
Me, too, Pris. Like I mentioned with our camping trips – it is just so rejuvenating being alone with our little family and out in nature.
The problem of social exhaustion might just be one of the most difficult things to live with because people (doctors included) just can’t wrap their brains around a symptom so strange. We need a paradigm shift that will include the different ways in which a neurological disease can manifest itself. What other disease punishes one for being social ?
Absolutely, Deborah – I agree! It’s very hard to try to explain to other people – even doctors – but it’s one of the things that most limits our lives.
I personally think the cause to be too much Microglia which results in too glutamate activity in the brain in response to any form of stressor.
I’ve tested this by taking GABA powder sublingually in social situations when I feel wired and tired and that horrible feelings disappears almost instantly. GABA reduces glutamate activity.
Glutamate excites the brain, which if excited to too higher degree causes symptoms similar to people suffering with Autism, so you become ultra sensitive to sensory input and socialising just becomes too much over time. This was explained very well int this article from the site:
http://www.cortjohnson.org/blog/2013/02/15/glutamate-one-more-piece-in-the-chronic-fatigue-syndrome-mecfs-puzzle-the-neuroinflammatory-series-pt-ii/
So try taking GABA powder sublingually under the tongue, it helps me a lot. I also take Valerian Root as that boosts GABA levels.
Thanks for the suggestion Jordan…
I appreciate the info Jordan! Affordable solutions are doable for me. I’m going to look into the GABA sublingual. Can’t try the Valerian as I’m one of the 5% for whom it’s a stimulant. With all the subsets of this disease I’m embracing the idea that one must find the right combination of treatments that works for their symptoms. Gets back to affordability for me, thanks!
I have just emailed my family and sent them a link to this blog post, with a bit of an explanation. I hope they might better understand why they have had to accommodate me the way they do.
Diane, what a good idea!
I hope it helps, Diane! I’ve had limited success with trying to educate loved ones – friends usually appreciate information (and many of them read my blog), but much of my family is in more of a denial state of mind. It’s been 13 years now, so it’s not complete denial anymore, but they prefer to just pretend everything is OK rather than discussing my illness openly.
I hope your family is receptive!
Sue
One big problem is that I have probably had this illness since age 7. I know I had these symptoms in secondary school but did not know the word ‘exhaustion’ to explain it. This means my family has seen me drooping around for most of my life and just thought I was lazy, no initiative, etc. I finally got a diagnosis 20 years ago and have gradually started telling them things.
They accept and understand it enough that when I go over there and stay, the grandchildren are warned not to be too noisy around me, etc. Even if the house is full, I’m always given a bedroom to myself. When they stay here, they help with food and they only expect me to be a tour guide every second day. However, there’s a lot that they just don’t know.
I have had one response so far from forwarding the blog. My brother-in-law said that it all sounded very logical to him. Thereagain, he was diagnosed with post-viral fatigue for a while, so he can understand some of it.
OMG ladies, stay out of my diary, lol!
But in all seriousness, a LOT of this is very familiar.
TOO similar & I’m glad we can all see that.
Wish some of our families could.
Absolutely! I too have this “social exhaustion” issue. Too much stimulation, too much noise, too many bright lights, you name it. As much as I a social creature, I need my “me time”. My poor hubby has to try to stay quiet all the time, has to listen to the tv on low.
I think many could relate easier if we just liken it to PTSD. I’m always in “fight or flight” mode. Startling me is a Very Bad Thing. I live in fear of being jostled, bumped into. An even worse Very Bad Thing!
In a major pain flare kinda day here, so sending myself back to bed soon here. Keep on fighting everyone. Never give up!
Sorry to hear you are in such an extreme state, Shannon. I hope the extra rest today helps and you are past your flare soon.
Thanks so much Sue.(and Cort for making this wonderful blog available to us). You are so articulate Sue. I totally have to beware of social exhaustion. I do not have the large family that you have. But even with my group of friends, I prefer to talk on the phone or visit one-to-one…with major amounts of solitary time. I basically don’t go out in the evenings. I love to get in my pyjamas early and read or watch Netflix. I do have some friends that feel hurt by my lack of contact. I’m afraid those friendships are going to go by the wayside because I can’t caretake anymore. I love the feeling of no obligation. I need all the energy I have to be with my uncomfortable physical sensations and to keep my heart and mind in a good place.
I know just what you mean, Kate. I lost a couple of friends when I first got sick – one was just uncomfortable with the whole chronic illness thing – didn’t know what to say or do so she stopped interacting with me. But the other one, it was specifically because I had to cancel out of a party at the last minute because I was too sick to go – she got mad at me and never called again! I guess this illness shows us who our REAL friends are. My closest friends, who have stuck with me through 13 years of this, totally understand that I often have to cancel at the last minute and they still keep inviting me 🙂
“All activity is energy.” That is the mantra I use. Some people get it; some don’t. I did the spoon thing with a couple of people. It scared one away; I haven’t seen her since. Some times you can’t win.
Other diseases do punish people for being social. I have Crohn’s disease. No one understands why but I’ve had a miraculous remission for many years. However, when I worked for the Crohn’s & Colitis Foundation I listened to many people who were exhausted a lot. I was when my disease was active. Once a year we had a support group meeting for friends and family. All these issues came up.
I have a close friend who went to work right from chemo. I told her not to go to work; once you show up you are considered normal. She lasted a month. I remember her telling me colleagues would walk by and leave her to open the heavy doors in the hallway. She was being treated for breast cancer and couldn’t lift one arm.
I’ve found that some people can’t handle illness; their own and others. They are the most difficult.
It doesn’t help to look good either. I had an E.R. nurse say to me,”you look too good to be sick.” I was sent there because my doctor thought I was having a heart attack. One doctor actually put it in his notes.
Deborah: Anyone who doesn’t accept renal failure as a serious problem is a lost cause. Let them know you’re lucky to be alive.
Andrea, you are right about some people not being able to handle illness. In my experience most people can’t handle illness. Most of my friends and pretty insensitive toward me in various ways. Not fun.
I know just what you mean, Andrea. I lost a couple of friends when I first got sick because they were just freaked out by chronic illness – didn’t know what to say or do, felt uncomfortable, etc.
Fortunately, I am blessed with some REAL friends who have stuck with me – who want to know more about my illness and who totally understand my limits.
And I think we can all relate to the cringe-worthy, “But you look so good!”
Social occasions are turning into phobias for me. Last week I had two social occasions I really, really wanted to go to and ended up going to neither. There’s a sense of shame that always surrounds the realising I’m not going to be going, this horrid feeling of letting people down. And so I think that contributes to the extra anxiety I try to fight against the few days preceding a social event. Will I be okay? What if I can’t make it? Panic,panic,panic. It’s not great – the extra stress probably contributes to the very thing I’m concerned about happening.
Ah, CFS. You give, and you give, and you give 🙂
I know what you mean, Sue.
I have realized that when I agonize over whether to go or cancel to some event (like one of my book group meetings), I know when I’ve made the right decision. When I am waffling back and forth and finally text my friends that I can’t go…if I feel relieved rather than disappointed, then I know it was the right thing to do!
When introverts are stressed they reduce stimuli since the stimulation of people and things is what stresses them out the most. This behavior is negatively interpreted by extroverts as neuroticism or depression. After all, just the mere thought of withdrawing strikes terror in the heart of the average extrovert.
Introverts, like myself, have known for most of our lives, that if we don’t withdraw and re-charge our batteries, we will suffer the consequences; exhaustion, depression and lack of joy.
Extroverts enjoy the external world of things, people and activities, Outgoing, extroverts are blessed with an abundant amount of the neurotransmitter dopamine, but this is not the case for introverts. For those of you who say, you were always outgoing until you developed ME/CFS and now have to withdraw from activities, perhaps, it just took you longer to become dopamine depleted.
Rachael, all good points about extroverts and introverts. I have friends who are in constant motion – movies, plays, concerts, parties, fundraisers, bike rides, volunteering. I have to work pretty hard at not comparing myself to them unfavorably. Their lives seem much more exciting. I can’t do all that stuff and I’m not sure I’d even want to if I were well.
I do think I’d like a bit more dopamine, however!
I can relate to all of this social exhaustion. I haven’t been able to socialize for a couple of years except for phone calls and Skype occasionally. Every once in a while a one on one talk. And last year there were two funerals I just couldn’t attend, even though one was for a dear friend who passed away suddenly. I wanted to go, but with all the emotion, I couldn’t stop crying, and was embarrassed that I wouldn’t be able to handle my emotions at the funeral and having to interact with all those people. Has anyone else had this happen? I also wasn’t able to go to a wedding either. Yes, it makes you feel so isolated. I’ve had to stop worrying what other people think of me. You can only do what you can, and only yourself knows what that is.
You are right, Sharon, about accepting your limitations and giving yourself a break. Since none of my family lives nearby, a funeral means not only the event itself but also traveling…so yes, I have had to miss a couple of funerals/memorial services for my family. It is so hard. I participate in my own way, though, by making a DVD of photos to mail to my family that they can play during the memorial or visiting hours. That helps.
Hi Sharon,
I am a 59 year old man who rarely cried prior to CFS. Now I cry (involuntarily) all the time, don’t know why most anything will trigger it. I have also become extremely sensitive to the sight of people holding knives, and really cannot watch tv scenes of people getting cut with a knife (which occurs hourly it seems on most tv shows.) None of this ever bothered me before CFS. This disease is endless in the strange symptoms…so yes I can relate.
This is pretty much an accurate description of my life from onset of symptoms in secondary school onward.
As well as how people react to it.
TY.
I’m sorry to hear you’ve been sick since school, Anastasia. I was 37 when I became ill, so I can’t imagine getting sick as a young person…though my sons got sick when they were 6 and 10, so it’s been heart-breaking to watch them miss out. Thankfully, one is fully recovered now and the other is well enough to attend college, live on campus, and has a very busy social life. He does sometimes come home, though, to just veg out on the couch in our quiet house and recuperate!
Hi Anastasia. This too started happening in secondary school. Did it suddenly start happening after an illness, or was it gradual?
It’s really hard when you used to be a jock, not to be able to keep up – and the chronic ocular migraine problem is the worst – bright lights are sheer hell to me! I totally understand all of you, and I sympathize thoroughly!
I wasn’t really a jock but did love to exercise, move, and be fit & strong. Sometimes, I just want to RUN!!
As for the migraines and light sensitivity – those are very common symptoms of Lyme disease. My older son had both symptoms fairly severely and was FINALLY (probably 5 years after infection) diagnosed with Lyme plus 2 other tick infections. After several years of treatment, he is doing much better and the headaches and light sensitivity have become much less frequent.
The only way to know for sure whether this might be the case for you is to be evaluated by a Lyme specialist – there are no reliable tests for any of the tick infections (most pick up about 50 -65% of the cases only). Here is more information, plus a link for finding a Lyme doctor near you:
http://livewithcfs.blogspot.com/2014/06/why-everyone-with-mecfs-or-fm-should-be.html
Hope you look into this – it could change your life! It certainly has for my son, who is now in college, living on campus, and enjoying a full social life.
Best –
Sue
This reminds me of Elaine Aron’s books: “The Highly Sensitive Person” and “Too Loud, Too Bright, Too Fast, Too Tight.”
Dominie, I thought this too. I am an introvert and also HSP. It seems ME/CFS/SEID increases those characteristics!
I too become exhausted from socializing. I usually don’t get invited to family events, so have to plan them myself about once per year. Must rest a day before and a day after going. I can’t read the menu as well as socialize, so try to find out beforehand from the internet what to order. (Try to split a meal with someone to keep the cost down.) I stress out preparing to go, just trying to shower, figure out what to wear for temperature control, do my hair not being able to lift my arms for long. I do a little, rest, a little more, rest, etcetera. I blank out while sitting there, or forget words and try to find substitutes. I try to listen to others, but am mostly living in my own mind, thinking up things to say. Unable to express anything fluently, I’m slow to start so miss the opportunity to speak, then butt in inappropriately and by then off-topic. I feel blinded by light, unable to focus in restaurants, feel deaf even, and cannot overcome background sound pollution. Afterward, I know when I’ve done too much when I come away saying every few moments to myself, “Oh boy.” I feel over-revved and often unable to sleep, so sleep in the next day, often having peed myself. The socializing is absolutely necessary, though, to keep up to date, and seeing family members is emotionally precious.
Edi you describe very well all the preparations and after-effects we all endure in order to socialize – so much of this is invisible to other people! I always try to rest the day before my book group.
Absolutely! Just the same with me, people and talk worn me out musch more than a walk.
Oh thank you so much for expressing so clearly what I feel!!!!!
Wow, I now know what to call what I’ve been going through.
I have always felt like I’m being nasty when half way through a visit of friends or family that I start squirming and want to go to bed. Sometimes I even go to bed, thank god for my lift chair.
I have had friends wanting to come over and knowing that I have something on the day before hand, I cry off and say that I’m busy. Its because I know that laying down in peace and quiet is what I will want.
Thank you for vocalizing what we all think.
Glad you could relate to the post, Kellie…though, of course, sorry that you can relate!!
I am very fortunate to have some wonderful friends who understand – they know I can only do one thing over the course of several days, and they get it when I have to cancel at the last minute.
It’s hard to find the words to describe this stuff, isn’t it?
thanks for your post Sue! This seems to be a real common thread for most of us with ME/CFS/SEID.
I, too, get easily tired with socializing as well as telephone calls. I have more margin than I used to, especially on the phone although I, too, tend to dip by evening and avoid calls then.
I’ve been researching the topic of chronic diseases of all kinds, including mine of CFS and how it may represent a form of trauma response.
Like Shannon, I wonder how much of this difficulty with socializing may reflect a version of PTSD / trauma. Overstimulation, being wired and tired, having trouble shifting out of the excitement phase – I see all these as signs of a nervous system that can’t’ change gears very well ie: stuck in fight flight OR freeze (the flat droopy face and body and gradual loss of facial expression as the fatigue sets in). I don’t shift into the rest states very well either, and see it as a hallmark of CFS – and trauma.
Like many people with ME/CFS/SEID, I’ve had to learn how to say no (I’m still working on it). I still fall into conversations where I’m being talked at rather than able to participate in a two-way conversation. The latter type of conversation is much more tiring. And I find a group more tiring than 1:1.
Like you, Sue, my mother has trouble with my taking time to take care of myself, as you did that evening when you would so much have preferred to have stayed with the group. One of the sources of unrecognized trauma that may contribute to our difficulty with social situations as adults, as I increasingly see it, is having parents whom we love but who may have never quite “gotten us.” ie: my parents still talk “at” me more than have conversations “with” me much of the time.
I recently had a great time with a couple friends. There was so much more ease than usual that I could really notice a shift from previous times where I used to have a constant stream of negative self-talk going on inside at subtle levels during conversations (did I just say too much? was I too direct? should I have been more connecting with my comment? ….). That alone, I suspect, is exhausting. On this particular recebt evening, I felt ease with being who I am, saying what I thought, offering my opinions etc.
Have any of you ever noticed that type of self-judging / shaming / blaming patterns? I see these as stemming from the almost invisible experiences we’ve had as children in our relationship with parents who are subtly blaming / shaming / judging who we are (usually with no intention to do so, just perhaps from their own trauma).
It’s a fascinating topic and exploration at any rate, eh?!!
Wow, you brought up so many good points, Veronique! As you said, a fascinating topic to explore. You are right about the “fight or flight” response. Endocrine dysfunction is an integral part of ME/CFS and part of that is that our bodies don’t release the right amounts of hormones at the right times and can’t clear them out of our systems effectively. So, when we are exposed to stress, our bodies release too much adrenaline and epinephrine and then can’t clear it out of our bloodstream when the stressor has passed.
Interesting theories on trauma – I’m sure that is true for some with ME/CFS, though it’s not an issue for me. I have no past traumas and was living a very happy, content, active life when I suddenly got ill. And my mother was always my best friend! All of our problems came after I got sick – she just hasn’t been able to deal with it in a healthy way (I think it’s the way she was brought up – the rest of her family is the same!)
So glad to hear you have been improving and can tolerate some social interaction better now.
Yes! Exactly right! Reading your post, I felt as if it could have been me writing those words. This disease is still seeped in mystery, and yet we so often find common threads — I am confident this can be explained from a physical, medical perspective and then maybe even treated — don’t you think? Someday soon, maybe? I like your term “social exhaustion” — that sounds right. And again, that part about feeling overstimulated, as if our brains go into a kind of overdrive. Some of the comments elaborated on the fact that phone conversations can produce a similar exhaustion and I totally relate to that too!
I want all this commonality to be understood for what it means physiologically and applied so that patients can get some kind of treatment, just a little relief. Someday.
Me, too, Liz!!
I think research has answered the “why” already…the immune dysfunction and endocrine dysfunction are at the center of it. It’s the “how to fix it” that is still a mystery!
I have noticed that as I’ve treated my illness and improved bit by bit, this aspect has improved as well.
I think the immune system is like the last frontier in medicine! There are so many immune disorders and only mildly effective ways to treat them – no cures…yet!! I do have high hopes for the future 🙂
Hi Sue, would you mind posting the links to that research, it sounds interesting.
This all sounds VERY familiar. Groups of people exhaust me vey quickly, along with lights noise, etc ….pretty much over stimulation in general…. I don’t enjoy shopping or eating out often either (hardly at all) for the same reason….too much noise and I end up not being able to process anything well, crashes happen more with these outings. It does seem that there is something about other people especially in groups that can tax me very quickly. I wasn’t always this way….I used to love going shopping or going to a fair because of all the noisy excitement and action….now I feel like an old woman and am less ill if I stay as much a reclusive hermit as possible. Someone mentioned how we would have to get used to the idea of disappointing other people. I try to make up for this in my own quiet ways but I know that to some extent this is true….and especially hard if you have children who cannot really understand and really ,for me at least, I’m not sure how much I want my child to “get”this illness. Sometimes I wish he saw even less of it than he does. Its kind of a damned if you do and damned if you don’t place to live in….this illness state that is…kind of invisible but not entirely to the people you are close to.
Had to laugh at your comment because I often describe myself as an old lady, too! Napping every day, staying in a lot, going to bed early, etc.
I understand what you are saying about the difficulties of being a parent – my kids were healthy (though too young to really understand) for my first 2 years of illness. Then, they both got sick, too, so they understand all too well what it is like. I do think there are some silver linings to being a sick parent – I believe we should be open with our kids, let them know what we are dealing with and feeling – it makes them empathetic and caring people from a young age. I mean, it sucks…but there are some positive outcomes. Also, I feel like my kids now have a very open and honest way to deal with other friends or family who might become ill during their lives. Goodness knows, our society needs more people who are comfortable dealing with chronic illness and won;t just fade away when a loved one gets ill! In a way, we are training the next generation 🙂
Thanks for that perspective Sue,
I suppose there must be some good that comes from it all. You are right that our society needs more people who are comfortable with chronic illness and aren’t so afraid of it all that they turn away
I like the idea of training the next generation to have better coping skills and healthier acceptance. It must have been hard having your children sick also, in that regard I have been very fortunate.
Hi everyone and thank you for sharing your stories. I’ve been ill with CFS/FM for 28 years. One thing that has always stood out to me is the large number of “introverts” compared to “extroverts” that I have met with CFS. Since the general population in the U.S. is supposed to be 25% introverts & 75% extroverts, then why do so many introverts have CFS? I’m using the Myers Briggs Type Indicator for reference as to what defines introverts vs. extroverts. Introverts get their energy from being alone and pulling away from the outer world of people and external things ( introverts get drained by too much time with other people and the outer world, meaning, outside their own heads), and extroverts get energized from being with a lot of people and need more stimulation. It’s not that introverts don’t like being with people, it’s just that we (I’m an introvert) get drained of energy if we have to be with others for too long. We prefer small groups vs. large groups. We recharge our batteries by being alone. This difference applies to well people, so wouldn’t it cause even more problems with those who have CFS?
According to the research I’ve done, introverts have different brain wiring than extroverts. Introverts naturally get overwhelmed by being out in the world. We spend more time living in our own heads and are inward focused. I’ve always thought that being introverted is a predisposition to getting CFS. I remember as a child getting overwhelmed at times by social situations and needing to spend a lot of time alone just reading.
I have severe problems with light, sound, and odor. I am easily drained when I’m with others. It’s always been an over-stimulating situation for me, even before getting CFS. Work environments were always more difficult for me than for all the extroverts with whom I worked. I would have to close my office door when possible to get away from others and have some quiet time to let my nervous system calm down – even before CFS. I would dread getting party invitations – I would attend, but come home exhausted – again this was even before I got CFS!
There are physiological differences between introverts and extroverts and I can’t help but think that there is a connection to who gets CFS and who doesn’t. Everyone has stress, gets viruses, etc., but why do we get CFS?
Hi Tanja. That is an interesting theory and as I wrote a comment earlier I was tempted to wonder along the same lines. However, I suspect that we adjust. I think Extraverts with CFS end up acting like Introverts because it is the only way to survive.
The reason I think this is because I am an INFP but everyone comments on how organised I am. My organisation skills have developed as my defence. Although my natural personality trait is to be spontaneous, I have learnt that I can’t be spontaneous with this illness; I have to prepare. This helps me combat the mind fog and ensures I don’t do too much on any one day.
However, it would be an interesting study to conduct, to test out your theory!
ENFP here! Your comment was interesting to me because I’d always heard the opposite – that studies show that “type A”, outgoing, very active people tend to get ME/CFS more. I know a lot of people with ME/CFS who would describe their pre-illness self this way.
The truth is probably somewhere in between! Perhaps personality has nothing to do with it. There is certainly plenty of research showing that the underlying cause of ME/CFS is a genetic predisposition plus an infectious (or in rarer cases, traumatic) trigger.
Hopefully, research will continue to move forward and unravel these mysteries!
Hi Sue,
I think the issue is that many of us were Type A, but Type A because we were trying to please others, hence the need to make sure everything is perfect, no errors, working our asses off to please OTHERS, not ourselves. Which creates a lot of inner stress, which eventually overwhelm introverts but not extroverts.
I have never heard the ‘outgoing’ part at all, and there’s a long thread on Phoenix Rising that shows the vast majority are various versions of introverts.
Diane,
I’m an INFJ on the Myers Briggs, but always appeared to be an extrovert to others – very social, outgoing, etc. but at my own expense of getting over-stimulated. I liked being with people and doing activities, but I then I would need to be alone doing solitary activities to recover. I know we have to adjust to how we live now that we have CFS/FM, but I’m still wondering if our personality types before becoming ill caused us to somehow be predisposed us to becoming ill. I think it’s just so strange that about 95% of the people I’ve met with CFS are introverts. It would be great if we could do a self-reported survey to investigate this. The only problem would be that participants would need to understand what defines introverts vs. extroverts – that would have to be made clear. It has to do with where do you get your energy, introverts get drained from being in the outer world after a period of time, and extroverts generally get more energized. Ex. an introvert would come home from a party and need to recover, but an extrovert wouldn’t want to come home at all (and be looking for the next invitation)!
Tanja,
It’s the F part of our type signature that makes people think we are extraverts – the fact that we respond to people.
I have done a lot of reading over the years about Myers-Briggs, and I know they say that your basic Type does not change, though you learn to access all the other areas and to use them when necessary. I suspect that what you see in people with CFS is that they are learning to access their shadow as and when necessary.
This morning my sister emailed me after reading the link I sent her to this blog. She is a definite Extravert and always has been. When her children were young, she had to take them out every day. She could not stay in the house without adult company and stimulation. She wrote: ‘The social exertion blog I can certainly relate to as since I have been diagnosed with anxiety I find I can’t take as much socially. Sometimes I just turn off when people are all talking at once.’ So here is an example of an Extravert who is now beginning to act like an Introvert because of health issues. She spends every evening playing games on the computer in a room by herself as her way of switching off from the world.
Just a theory – no proof – and your theory is as good as mine.
Diane,
I should have clarified that I am trained to administer the MBTI, so I have a special interest in it. Over many years of meeting CFS patients and getting to know them, I asked them if they identified as I or E before becoming ill. About 95% clearly felt that they were “I” before becoming ill.
I haven’t found anything else to explain why I became ill, so my research on physiological differences in brain wiring and personality have kept my attention. Thank you for writing this blog.
Aha, that extra bit of information makes a lot of sense, then!
Hi, again, Tanja –
Actually, I wrote the blog post!
I didn’t realize you’ve conducted some of your own research – that’s really fascinating. I’ll be interested to hear what else you discover! Thanks for sharing your findings.
Hi! I am so glad to have found this blog. I have had a recent awful experience. I have a large group of friends and we travel to places and scrapbook. Sometimes even cruises. I have Fibro., RA, CFS, ADD, Insomnia, Post cervical spine fusion syndrome. Etc…. I am realizing that I can no longer participate. It’s absolutely breaking my heart. I loved being with 30 other women from all over, crafting mindlessly and chatting. Like an old fashion quilting bee. 3 days ago I saw an email I wasn’t suppose to see. 2 of my friends were being so horrible. Talking about me, that I’m lazy, they’re over me being the victim, I’m always putting people out, so on. One of the ladies was ferocious and really trying to pull my closer friend into bashing me. Funny enough, the husband of my closest friend had warned me about the other lady many years ago! Many lies, and changing of my words. They do not know that I saw this. I am house-dog sitting for one of them as I have done often, with my husband. I have been crying off and on over it. I know the physical aspect of these trips are too demanding. But they wouldn’t be happy with me if I went to take a nap. I can’t keep up with them. They were amazing the first year or so but are now apparently ‘sick and tired of me being sick and tired’. I am a RN, Labor and Delivery, was in the Navy, and the Army. I have a very supportive husband and adult kids, plus 2 grandkids. I could no longer work, we lost our home, live comfortably with my folks, helping one another out. I have no idea how to deal with this. I took the test in college…our professor for Psych offered it to us. I don’t remember the details but I remember he said “you are straight down the middle, you are either the most balanced person in the world or you just don’t give a damn”… I’m nice to everyone I meet. I give what I can. I am tender hearted and have always been a cry baby. I am so depressed over this situation, stunned and shocked to the core. I didn’t realize that 50-60 yr old women behaved this way. Please…I need guidance in how to handle this.
Hi! I have had a recent awful experience. I have a large group of friends and we travel to places and scrapbook. Sometimes even cruises. I have Fibro., RA, CFS, ADD, Insomnia, Post cervical spine fusion syndrome. Etc…. I am realizing that I can no longer participate. It’s absolutely breaking my heart. I loved being with 30 other women from all over, crafting mindlessly and chatting. Like an old fashion quilting bee. 3 days ago I saw an email I wasn’t suppose to see. 2 of my friends were being so horrible. Talking about me, that I’m lazy, they’re over me being the victim, I’m always putting people out, I could work. One of the ladies was viscous and really trying to pull my closer friend into bashing me. Funny enough, the husband of my closest friend had warned me about the other lady many years ago! Many lies, and changing of my words. They do not know that I saw this. We are house-dog sitting for one of them as I have done often, with my husband. I have been crying off and on over it. I know the physical aspect of these trips are too demanding. But they wouldn’t be happy with me if I went to take a nap. I can’t keep up with them. They were amazing the first year or so but are now apparently ‘sick and tired of me being sick and tired’. I am a RN, Labor and Delivery, was in the Navy, and the Army. I have a very supportive husband and adult kids, plus 2 grandkids. I could no longer work, we lost our home, live with my folks, helping one another out, and lucky to have them. I have no idea how to deal with this. I took the MB test in college our professor for Psych offered it to us. I don’t remember the details but I remember he said “you are straight down the middle, you are either the most balanced person in the world or you just don’t give a damn”… I’m nice to everyone I meet. I am and have always been a cry baby. I am so depressed over this situation, stunned and shocked to the core. I didn’t realize that 50-60 yr old women behaved this way. Please…I need guidance in how to handle this. Ty!
Ps..sorry for the post 2x. It didn’t go through the first time and I thought it was too long, shortened it, sent and when I checked…voila! it was there twice! mca
Hi Melinda,
I’m so sorry you’ve experienced such anguish and pain from other people’s ignorance and lack of awareness. One place for ideas and support is a well respected blog by a Jenni Prokopny who has chronic illness herself and offers thoughtful, nonblaming, direct solutions, suggestions, tips and ways of working with these kinds of experiences, which are remarkably common for those of us with chronic illnesses of all kinds.
You can find her here:
http://www.chronicbabe.com/
Hi Tanja (and hi Diane!),
What a great question you raise.
Following up on a thread I brought up earlier about trauma, I wonder if trauma is playing a role in our CFS as well as in what it’s like for us to interact with others or want or be able to.
I was an ENFP before my medical training as a doctor. After my training, I scored as an INFJ.
I found medical training to be traumatizing in many ways, not least of which was witnessing trauma and the effects of trauma on people and their lives and bodies and health.
A theme I wonder about and see in myself as well as in some of these comments is what kinds of effects we may have from our earliest relationships – the relationship we had/have with our parents / caregivers. Did we learn that it was okay to say no? that it was okay to have our needs even if they were different from our parents’? was it okay to ask for what we wanted? to have preferences that were different from our parents’? are we carrying these earliest patterns out in our adult worlds, by having internal judgment / shame / self-blame / self-denigration about the decisions we make or need to make? Are we carrying these in adulthood as a nervous system state of dysregulation similar to a freeze / hibernation / immobility state?
In my research of the past 10-15 years (as a former physician and psychotherapist with CFS) I’ve learned that trauma does not lead only to psychological issues. It actually causes problems with our nervous systems’ ability to regulate. We see sensitivity to light, noise, environment and social interaction in people who have symptoms of PTSD as well. I wonder if trauma may also be a cause of our CFS as well – on a very real, very physical level that hasn’t been recognized.
There is a kind of subtle childhood trauma that has been researched and that is linked to increased risk for chronic illness. (I wrote a post about this on my chronic illness blog and the link is attached to my name above).
This occurs when the attachment bond between kids and parents is less than ideal. Parents may love us, be caretaking, attentive to food / clothes / shelter and needs, but not be attuning, warm, or nurturing. They may not see us, who we are or support who we are. This is often due to their own trauma and has long term effects on how we learn to interact with the world and whether we feel safe.
I was struck by how some people in the comments (like me) have trouble being able to settle or relax when someone else is in the house or in the same room. I see this as a potential nervous system pattern we developed for survival (hypervigilance / always having to be “on”) from growing up in households where we couldn’t be ourselves or be supported if we needed to rest or relax or slow down.
Does this make any sense to you or anyone else?
Hi Veronique
Your comments make a lot of sense in view of my life. I am aware that as a child I was never allowed to say no. My two older sisters seemed to delight in finding things to criticise about me, so I learnt to be hyper-vigilant and to anticipate where possible so that I wouldn’t go wrong. (Now my ballroom dancing teacher says that I go wrong because I try to anticipate where he is leading me instead of following. Haha. A defence mechanism too well learnt!) I am an INFP in a family of ESJs, so I was never going to feel ‘right’; I would always be ‘different’ and therefore ‘wrong’.
It is only now, in my 60s and since giving up work (therefore more energy to think clearly) that I can see my parents’ love shown in the way they helped me buy my house. However, the love was not evident in the nurturing stuff that mattered to an INFP. Having two older sisters was also like having two extra parents who thought they could direct my life, with the added problem that they were in competition with me. (I’m not competitive.)
I too cannot relax when someone else is in the room or the house.
I am not convinced about the trauma leading to the CFS but I am open to further evidence if it emerges. I will now read the article you mentioned. Many thanks.
Hi Diana,
Your childhood was quite something (or “not” something, to be more precise). Seems so subtle on the surface, yet so real in our personal experiences with such an impact. Thx for sharing that.
It’s interesting to see what we’ve learn as defenses, isn’t it? And how they can show up in so many different ways and places in our lives (who’d have “thunk” re ballroom dancing, but it makes total sense!).
Here’s to future studies – meyer’s briggs, early childhood and more!
Veronique this fits for me. I read your blog (and am now reading “When the Body Says No”) and find it hopeful as an explanation and treatment approach. I know it’s a very fine line when we begin to look at the mindbody links, especially as the “all in your head” accusation is so prevalent in ME/CFS/SEID. I am grateful that in your blog and the book there is none of this but rather explanations of how stress effects and damages physiology!
Hi Janice,
It really is a fine line – there has been enough blaming and shaming to go around for ME/CFS/SEID and the role of trauma and stress to last many lifetimes. It has been used more like a hammer than a helpful explanation. I think the newer research can really help shift that perspective – I think it’s that our nervous systems and brains have a new “set point” following trauma (including much of trauma that is invisible and not recognized in our society or in medicine). The new research hasn’t really made it to the clinical world and to “the trenches” yet. So glad you’re finding Gabor Mate to be compassionate and with a different perspective as well! Wishing you the best in your next few days of recovery post social engagement!
Veronique,
That parent/child relationship was the psychiatric theory of Crohn’s disease in ’65. However, it only involved the mother. There was no basis. Crohn’s was considered a psych disease by many. The psychiatrist I went to a few years after I was dx told me it wasn’t and I cried for the whole session. But he helped me live with it then, I was quite ill. He told me I had one of the best all time mothers.
The Crohn’s personality kept changing. I couldn’t tolerate grief, then I became a type A. The Crohn’s and Colitis Foundation had to get rid of the mythology before there was any good research.
It certainly didn’t apply to my childhood. I was blessed.
I was an extrovert and still am. I think it makes things more difficult to pace. I forget and become the social butterfly I once was.
It’s been painfully hard to be alone so much because I miss socializing. I feel isolated a great deal.
Hi Andrea,
I’m so sorry about the isolation being such a challenge – it is for so many with CFS and other chronic illnesses even if others of us are introverts.
And I’m so glad that you found such an empathetic psychiatrist and had a childhood with so much support – and a wonderful mother. What a blessing indeed!
There has been terrible stigma associated with psychological causes of disease – there still is. And there is also blame and shame and judgment. No wonder you cried.
My sense about trauma is that it can come in many forms and not just the parent-child relationship or introversion. It has effects that are not psychological but that alter our physiology. I’m not talking psychosomatic / all in one’s head (which has also been and continues to be terribly stigmatizing and blaming) but about events that are too overwhelming or fast or unexpected and that change our lives because we are unable to resolve them at an unconscious survival-based biochemical level. Maybe it was our ancestors (parents and grandparents) who experienced traumatic events or something happened prenatally or in a difficult birth… Ultimately it’s that these events shape how our bodies learn to regulate and cycle through experiences of excitement into rest and back to places of neutral openness. Might that have any different impact on your experience of IBD/CFS?
At any rate, it’s a theory and I so appreciate your responding with your perspective.
Like you, I often forget to pace myself (it’s something I’ve had to do consciously for years because my body doesn’t automatically do it or I don’t hear the message to shift gears when it’s time).
Hi Veronique (and Diane),
I think trauma is a huge part of this, along with being an introvert, and maybe the intuitive also. We tend to focus on the future a lot, the S’s (sensors) don’t. My own experience as an INFJ child growing up in a family of SJ’s, attending Catholic school (traumatic for me), and not quite “fitting in” with my introverted intuitive personality (a small % of the general population), I think I have lived in fight or flight my entire life. I don’t remember when I wasn’t “on guard” or on edge. I think I observed as a child that other children weren’t as stressed as I was, but didn’t know why.
In Catholic school (elementary) I was afraid of the nuns and priests and always worried that I was going to hell if I didn’t do the “right” thing. We were always in church for some reason, and going to confession, where I often made up sins because I didn’t have enough to report – I was the good, compliant child at home and school. Then I felt guilty about lying to the priest! Well, it was either make up things or just keep repeating the same old sins such as, I had bad thoughts about someone, I lied to my parents, etc. So, as a creative intuitive I felt I needed to have more variety in reporting my sins! In 4th grade I told the priest I committed adultery even though I had no idea what that meant!
My parents were good people, but didn’t talk about feelings. I never told them how stressed I was about school and all areas of my life. I was told not to complain about anything, including not feeling well.
I wonder if the intuitive (N) part of our personalities is also a problem for some of us? Anticipatory stress and worry that the sensors (S) don’t deal with?
Hi Tanja,
You describe that subtle stuff that is never discussed but that can have such a huge impact on the way we learn to be / behave / act in the world and I think it all affects our nervous system patterns.
My parents were / are good people too and they also don’t talk about feelings. There was never really any room for the normal feelings of anger / frustration / grief / despair, partly because, I suspect, my parents didn’t experience any support for these feelings themselves. They grew up during the Depression to people who were also good parents.
Maybe the intuitive part that some of us have is linked to qualities that makes us more susceptible or maybe it is at least partly influenced by earlier events (multigenerational trauma as well as trauma during prenatal life and at birth – both of which I think also affect risk for the development of chronic illness).
I can relate, but it is my belief that we who have Fibro/CFS/ME and etc. are sensative. What I am really saying is that even when we do not know it that our sensitivity enables us to connect with Spirit/God or whatever your believe is. I also believe that by honoring that we honor where we are. The more silence we allow ourselves to be in the more we crave it. We are all energetic and so the energy that is brought in by your family, by the TV, electrical (EMFs) has an affect on us. So it is a gift and a (curse) This has been my experience but the connect that feeds me is the connection with Spirit and with Mother Earth. Are you not fed by getting out and feeling the fresh air? by the trees and the flowers, by putting your feet on the ground and connecting with the earth. Look up “grounding”. Also Dr. Mercola has this information and access to a movie about grounding. http://articles.mercola.com/sites/articles/archive/2013/10/19/grounded-documentary.aspx
I know this is my belief but I offer you the opportunity to open yourself to the possibilities. We are so much greater than we will ever know.
In the middle of all these comments about social exhaustion, I’m about to be plunged into a real situation of it!
A friend from overseas is visiting the UK at the moment, using my house as a base. She too has ME/CFS so the idea was that she would stay at my house for a rest between going to other places. That meant 3 or 4 days of social exhaustion followed by a time of rest before the next visit. She is currently in London ill, having spent part of today in hospital, too unwell to even come here by train on Thursday and in a confused state. Other friends of hers are paying for a minicab to get her to my house and then she will stay here for the 2 weeks until her return home – if she is well enough to fly back by herself. Failing that, she will need to stay for longer and go home on the same flight as her friends.
I am getting a tension headache just thinking of it!
Sue,
I’m SO sorry that my addled brain gave credit to Diane for writing the blog when it was you. Somewhere along the way my brain jumped the track. Also, when I spoke of doing research I just meant informal, for my own purposes. Didn’t mean to mislead. I just keep trying to find out why some of us get CFS and others don’t.
I just noticed that some posts are out of order time-wise. Sue, your post (time 4:34 p.m. June 23) is listed between posts that are from earlier in the day. I just happened to find it this morning.
ha ha – no problem, Tanja!
To be honest, I usually avoid long interactive online discussions like this – it IS hard to keep everything straight!
Sue
Sue,
I just realized that posts are out of order time-wise because some people reply to a specific person’s comment and others make comments at the very end. BRAIN FOG! I don’t know if other CFS patient have this problem, but as soon as I start to get low on energy or my pain level goes up, my cognitive abilities suddenly decline. My IQ seems to be that of a gnat when that happens. Ugh!
Tanja
I can so relate to this. I cannot stand large crowds. Large family gatherings can be a big problem for me. I actually prefer being home by myself most of the time. A few people is fine. I wake up drained and can’t function until the afternoon so I don’t make any plans until later in the day.
We were on a short trip last year and we went to a “tourist” shopping area and I went into one shop and it was so crowded with people and things that I had to leave. Then outside it was just as bad and I had to ask my husband to take me back to our Inn.
It can be so draining to be around family, which is sad, but true.
I can’t thank you enough for this. I wouldn’t be able to explain this with nearly the clarity that you have. This happens to me all the time. Even sitting quietly on the couch next to my guy, if the tv is on, after awhile I have to go into the bedroom for some quiet time. Especially if he talks to me at the same time the TV is on, it’s too much stimulation. He’s learned to mute the commercials and talk to me then. Once a week is about as much as I can take as well, I’m told I start to fade and lose the color in my face. He tells me I turn completely white and then he knows I have to leave. My daughter recognizes it as well, the slump and loss of color. And yes, Cort, talking on the phone does it too. Thanks again for this, everything just clicked for me…I’m not crazy!
Thank you Sue! This couldn’t be more timely for me as I had extended family visiting our area this past week and had social obligations. I read the blog and comments with relish and found it all very validating and helpful in setting limits and practicing self-care. Couldn’t formulate a reply till now and will need to continue extreme down time for a few more days.
SO grateful for the “conversation”!
I am 100% the same! Couldn’t describe it any better.
I bookmarked this article to show people who are interested.
Thanks
I get this too. I also get it if I work too much on the computer. A this happens I also feel my sinuses tighten and I tend to blink a lot. Does anyone else do this too?
The only thing that helps in the moment of socialising is to take GABA sublingually. I take the capsule apart and pour the powder under my tongue. It almost instantly removes that wired and tired feeling and I can feel my brain relax and soften. (I use Now foods GABA). I go from go from being way too overestimated to being really relaxed like I’ve just woken up. If I’m heavily socialising I repeat this every 20 minutes or so.
I think this wired and tired feeling is due to a combination of too much microglia and too much glutamate activity, similar to Autism. So take supplements that boost GABA levels that will in turn lower glutamate levels (as GABA relaxes the mind, whilst glutamate excites it).
Valieran root and Magnesium are other good ones.
Hey Jordan. Is that standard GABA that you take under your tongue, or is it a special form of GABA? I haven’t tried that before.
I agree about the glutamate activity – I recently started back on low-dose Lamictal, which has as one of its functions the ability to dampen down the CNS and reduce glutamate activity. The difference has been quite profound for me.
Hi yeah standard GABA. I tried a few and Now foods GABA 750mg works best. Take apart the capsule and pour half the powder under my tongue. Makes me feel really relaxed. Eating the capsule normally doesn’t have the same effect for me.
I highly recommend you take the online test for women with Aspergers Syndrome. What you are describing is what Id living for a long time until I had a total collapse. In the process of funding our why my Chronic Fatigue went so awry, I discovered that I was on the spectrum and had/have Aspergers Burnout. You will be shocked to see that women just like you describe yourself in college (similar to myself) later discover they are on the spectrum when they have a burnout. You may be surprised to learn that most women over 40 have gone undiagnosed because we are taught early on how to nurture others and how to mimic social norms. This masks our underlying issues that go hidden even from ourselves until burnout occurs.