Name Game

[Julie G]

I found a suggestion to call FM/ME/CFS "SEID" for Systemic Exersion Intolerance Disease. Most of you have probably heard of that. None of those names sound serious enough to indicate the painful and disabling nature of this disease. I feel ridiculous out doing errands or making appointments on the phone, explaining to people that I have a debilitating illness (23 years now) when I look fine on the outside. No cane, no wheelchair, no missing limbs, no bald head. I'm so grateful I don't have cancer, MLS, MD, paralysis or other life-threatening diseases. Yet, I'm NOT ok. Most people understand my explanations, but I feel SO guilty because I can still walk some (but NOT stand, like stand in line). How do some of you handle interacting with the public, that this illness is very real, very painful, very debilitating and damaging, but utterly invisible?

 

[CountingMySpoons]

I think that no matter what it's called there will always be a stigma associated with ME/CFS and Fibromyalgia because there aren't the outward signs, risk of death, organ failure, etc. Until/unless a real cause is found for these disorders that force doctors to take things seriously I think the stigma will always be there no matter the name.

 

[Julie G]

I think that no matter what it's called there will always be a stigma associated with ME/CFS and Fibromyalgia because there aren't the outward signs, risk of death, organ failure, etc. Until/unless a real cause is found for these disorders that force doctors to take things seriously I think the stigma will always be there no matter the name.

I agree that is sadly, likely true.

 

[JennyJenny]

I was just thinking this morning how no one who sees me and doesn't really know me actually believes I am sick.

Did you see the mini doc that just came out? VERY GOOD. Maybe you can share with your family and friends. I know it doesn't always work but it is still worth a try. Invisible Illness

It is on youtube and was originally published within an article in Palo Alto online.

 

[Tammy7]

I live in an apartment complex with mostly elderly residents.. (I'm 55 and probably one of the few youngest here). Sometimes I meet some of my neighbors out at the garden area...........most don't know me well as I am fairly new here. They sometimes tell me how they wish they were 55 again like me so that they could be more active. These elderly residents.........a lot of them are more active than I am! This one lady keeps telling me.............just wait till you get to be 75......then you'll really start feeling bad. After telling me this several times..........I finally explained to her what it was really like to be in my body. She told me she never would have guessed.......and I told her that's one of the main problems with people taking the disease seriously............... and one of the main problems (I think) with it not getting the attention it needs. She said to me..............I see you working in the garden.....you seem to really enjoy it, etc. etc. .............I explained further how just because she saw me working in the garden didn't equal that I was feeling good. I explained more to her and I think she finally gets it.............and I hope she lets the others know so I don't have to keep explaining!

 

[Julie G]

I was just thinking this morning how no one who sees me and doesn't really know me actually believes I am sick.

Did you see the mini doc that just came out? VERY GOOD. Maybe you can share with your family and friends. I know it doesn't always work but it is still worth a try. Invisible Illness

It is on youtube and was originally published within an article in Palo Alto online.

Thanks, JennyJenny! I will watch that.

 

[Lissa]

I totally agree on what feels like futility when dealing with the general public. I had an eye doctor appointment and got asked, what do you do for work?! Because everybody works of course... And I don't look sick or injured.

I replied that I'm disabled. And this time I stopped short. I found myself unwilling to explain. Unwilling to throw myself under the disbelievers bus. I couldn't bring myself to endure the raised eyebrow, the sideways glances, the "oh I get tired too" crapola line. Surprisingly enough- my clipped answer stopped the line of questioning.

But I drove myself home thinking... Why can't I lie? Why can't I make some crazy career up? Have fun with it instead of feeling defensive and icky. Why does if feel weird to say "I used to..."? And instead why do I always feel compelled to enlighten with a CFS speil when it usually seems so lost on people?

And I drove myself home so I could go lie down in an AC room and recover from my big adventure in the real world. All I did was order a new pair of glasses, and that's pretty much it for the day other than feeding myself. I look fine in public, but nobody can see what the other 12 hours of my day looks like.

Maybe I should have told the optician I'm a helicopter pilot, or a professional spelunker, or that I work for National Geographic...

 

[Julie G]

I totally agree on what feels like futility when dealing with the general public. I had an eye doctor appointment and got asked, what do you do for work?! Because everybody works of course... And I don't look sick or injured.

I replied that I'm disabled. And this time I stopped short. I found myself unwilling to explain. Unwilling to throw myself under the disbelievers bus. I couldn't bring myself to endure the raised eyebrow, the sideways glances, the "oh I get tired too" crapola line. Surprisingly enough- my clipped answer stopped the line of questioning.

But I drove myself home thinking... Why can't I lie? Why can't I make some crazy career up? Have fun with it instead of feeling defensive and icky. Why does if feel weird to say "I used to..."? And instead why do I always feel compelled to enlighten with a CFS speil when it usually seems so lost on people?

And I drove myself home so I could go lie down in an AC room and recover from my big adventure in the real world. All I did was order a new pair of glasses, and that's pretty much it for the day other than feeding myself. I look fine in public, but nobody can see what the other 12 hours of my day looks like.

Maybe I should have told the optician I'm a helicopter pilot, or a professional spelunker, or that I work for National Geographic...

Thanks, Lissa!! It's uncomfortable, that's for sure.

 

[Cort]

I found a suggestion to call FM/ME/CFS "SEID" for Systemic Exersion Intolerance Disease. Most of you have probably heard of that. None of those names sound serious enough to indicate the painful and disabling nature of this disease. I feel ridiculous out doing errands or making appointments on the phone, explaining to people that I have a debilitating illness (23 years now) when I look fine on the outside. No cane, no wheelchair, no missing limbs, no bald head. I'm so grateful I don't have cancer, MLS, MD, paralysis or other life-threatening diseases. Yet, I'm NOT ok. Most people understand my explanations, but I feel SO guilty because I can still walk some (but NOT stand, like stand in line). How do some of you handle interacting with the public, that this illness is very real, very painful, very debilitating and damaging, but utterly invisible?

I do find that SEID is better than chronic fatigue syndrome. I do rather guiltily say I have fibromyalgia and chronic fatigue syndrome - putting fibromyalgia first because it's more accepted. It's true I meet the criteria for Fibro at least some of the time but I self identify much more with ME/CFS...

I don't know if there's any easy way around it other than to just blurt it out and say it's a real and damn difficult disease!

 

[San Diego]

Right or wrong, I hide behind “dysautonomia" or “neurologic disease”. People seem to respect those, and I’m simply not up to the challenge of converting people to belief in ME/CFS. I tried that, and it always ended in frustration and exhaustion.

I’ve learned (the hard way) that the more I try to explain, the more insecure I sound and the more I’m met with disbelief. Like @Lissa, I’ve learned to “cut short” my explanations. Although this approach feels rude at times, I have to remember that I don’t owe anyone an explanation just because they ask a question.

While hiding makes me feel a little guilty, I remind myself that a real name has not yet been agreed upon. When it is, I may have to reevaluate. For now, I can’t really get behind SEID - seems a temporary label slapped on us until more answers are found, and I’m starting to think answers are coming soon.

 

[Julie G]

I do find that SEID is better than chronic fatigue syndrome. I do rather guiltily say I have fibromyalgia and chronic fatigue syndrome - putting fibromyalgia first because it's more accepted. It's true I meet the criteria for Fibro at least some of the time but I self identify much more with ME/CFS...

I don't know if there's any easy way around it other than to just blurt it out and say it's a real and damn difficult disease!

Thanks, Cort. I have both equally. I really appreciate your reply as well as all the others. Lately I've just been saying I have a really debilitating chronic illness & I'm often house bound and have to spend a lot of time in bed. That's all I've been saying.

 

[Julie G]

I do find that SEID is better than chronic fatigue syndrome. I do rather guiltily say I have fibromyalgia and chronic fatigue syndrome - putting fibromyalgia first because it's more accepted. It's true I meet the criteria for Fibro at least some of the time but I self identify much more with ME/CFS...

I don't know if there's any easy way around it other than to just blurt it out and say it's a real and damn difficult disease!

Everyone's comments in this thread are very helpful on the level of real day- to- day experiences and relatability. It helps me feel not as isolated, and I hope others feel the same. And sorry for the 2 replies. I couldn't see the 1st one until after my 2nd reply. But both contain thoughts and appreciation I wanted to express.

 

[Julie G]

Right or wrong, I hide behind “dysautonomia" or “neurologic disease”. People seem to respect those, and I’m simply not up to the challenge of converting people to belief in ME/CFS. I tried that, and it always ended in frustration and exhaustion.

I’ve learned (the hard way) that the more I try to explain, the more insecure I sound and the more I’m met with disbelief. Like @Lissa, I’ve learned to “cut short” my explanations. Although this approach feels rude at times, I have to remember that I don’t owe anyone an explanation just because they ask a question.

While hiding makes me feel a little guilty, I remind myself that a real name has not yet been agreed upon. When it is, I may have to reevaluate. For now, I can’t really get behind SEID - seems a temporary label slapped on us until more answers are found, and I’m starting to think answers are coming soon.

Thanks, Sdsu. I really appreciate & admire the openness & honesty in these comments. What you wrote gives me the idea of saying I have an auto-immune illness. It's truthful, and people are generally familiar with the idea that an autoimmune illness is the body attacking itself. That's something they can understand as a serious condition even if they don't know the exact illness. I think. I'll post next time I'm out and about and will let you guys know how it's received and how it feels to use that terminology.

 

[Julie G]

I live in an apartment complex with mostly elderly residents.. (I'm 55 and probably one of the few youngest here). Sometimes I meet some of my neighbors out at the garden area...........most don't know me well as I am fairly new here. They sometimes tell me how they wish they were 55 again like me so that they could be more active. These elderly residents.........a lot of them are more active than I am! This one lady keeps telling me.............just wait till you get to be 75......then you'll really start feeling bad. After telling me this several times..........I finally explained to her what it was really like to be in my body. She told me she never would have guessed.......and I told her that's one of the main problems with people taking the disease seriously............... and one of the main problems (I think) with it not getting the attention it needs. She said to me..............I see you working in the garden.....you seem to really enjoy it, etc. etc. .............I explained further how just because she saw me working in the garden didn't equal that I was feeling good. I explained more to her and I think she finally gets it.............and I hope she lets the others know so I don't have to keep explaining!

Wow, Tammy7, that all sounds so familiar. I've also had a few good moments where the opposite has happened. Sometimes in the grocery store I'll see an elderly person struggle with something and I'll ask if I can help. They're always so embarrassed that they are struggling. I always say, "I know it doesn't look like it, but I have a very painful, debilitating chronic illness, and I know how you feel. I can tell by the way someone walks that they are in pain." They appreciate that so much. It's the healthy people we have problems with! I have a close friend who lives in my home state who has FM / CFS and other conditions that have qualified her to live in elderly housing. I would love for her to join this forum, but she is finding it really difficult to be open with her struggles. I'll keep trying, every now and then, to see if she would join. Knowing there are other people around her age also in elderly housing may help. Thanks for sharing your experiences.

 

[Julie G]

Thanks, JennyJenny! I will watch that.

Hey, JennyJenny, I watched the Invisible Illness video and shared it on fb and my other forum. Several people saw it and I got a lot of meaningful feedback. It really made healthy people think. And those friends who have FM/ME/CFS & other serious health issues were very moved and grateful for the video. Thanks again.

 

[JennyJenny]

Hey, JennyJenny, I watched the Invisible Illness video and shared it on fb and my other forum. Several people saw it and I got a lot of meaningful feedback. It really made healthy people think. And those friends who have FM/ME/CFS & other serious health issues were very moved and grateful for the video. Thanks again.

Glad you got good feedback. My friend watched it and I think it even opened her eyes and she is very understanding especially since her daughter and sister have it. She passed the doc on to them.

 

[Julie G]

Glad you got good feedback. My friend watched it and I think it even opened her eyes and she is very understanding especially since her daughter and sister have it. She passed the doc on to them.

Maybe we should send it to the President. 2 million of us who want to get back into the work force, paying taxes and helping others.

 

[JennyJenny]

Maybe we should send it to the President. 2 million of us who want to get back into the work force, paying taxes and helping others.

I tweeted it to POTUS and the Whitehouse, the Queen, NIH, CDC, NSH and hundreds of others in the US, Ireland, Australia, Canada and the UK including advocates in case they did not see it. I asked them all to share. I tweeted to news media, doctors, celebrities, talk shows, nightly news and weekly news shows, hospitals, medical journals, my governor, you name them I tweeted them. We should be tweeting this out to our local news papers and news tv stations and anyone we can think of. I also posted on any ME/CFS FB that had anything that came up on ME/CFS searches and sent out a few e-mails.

That mini-doc is one of the best things that happened. Short, to the point, engaging, moving and exposing.

This is what I tweeted. "12min. Mini Documentary on ME/CFS https://www.youtube.com/watch?v=9_HwOUiImvw … Please view and share."

You can just copy and paste what I wrote and start tweeting out. It does not matter if the same news show or medical journal or whomever gets the same tweet, it will just show others want them to know.

 

[Julie G]

Go JennyJenny!!! Wow!!! I believe it will be through the combined efforts and talent off we the patients, working with the researchers, that will eventually find the cause or causes and the treatment options that work best.

 

[San Diego]

Thanks, Sdsu. I really appreciate & admire the openness & honesty in these comments. What you wrote gives me the idea of saying I have an auto-immune illness. It's truthful, and people are generally familiar with the idea that an autoimmune illness is the body attacking itself. That's something they can understand as a serious condition even if they don't know the exact illness. I think. I'll post next time I'm out and about and will let you guys know how it's received and how it feels to use that terminology.

Thanks for the nice comment! I was a little tentative about posting that, as I feel like a giant chicken and am not advocating for us. Perhaps if I was more than housebound/bed bound, I’d have the energy to do so. But for now, I have to reserve energy every way I can - and that includes not getting into debates with the few people I do see when I’m out.

I’m holding out for a miracle, even though some days that seems awfully far away.