If You Were Healthy Would You Date Your (Sick) Self? An ME/CFS/FM Inquiry

[Cort]

Seanko recentlyposted a Guardian piece "Why Not Date Someone With M.E.?" about a woman who had severe ME/CFS, then recovered enough to be successful in her work and lead a fairly normal social life. She still had physical limitations, however. She could walk to movie theater, for instance, but had to take the bus back. Still she'd been with her partner for awhile and she thought the "ME issue" was settled but it turned out that it wasn't...

[fright]

[/fright]She was completely shocked when her partner - referring to her M.E. limitations - told her "I can't take this anymore".

She argued that people with M.E. are tough and resilient and appreciate what we have. We should be celebrated for that

We know what it’s like to lose everything and have to rebuild, to struggle and carry on. We are remarkable well-equipped to deal with life, and value every experience because we know it can all disappear in a flash. Our imperfections should be celebrated, not rejected.

I don't see it that way, though. For me M.E. is more like this:

Your physical and mental activity become seriously reduced, and the condition is exacerbated by any infections, traumas, emotional or physical stresses. It’s as if you lose your skin, and suddenly your entire body is exposed. You become highly sensitive to your environment, and easily overloaded by external stimuli.

You're a person with special and unusual needs. A person without a lot of consistency. A person who wants to rest when you want to play. A person whose needs to withdraw and rest could be reviewed as personal rejections. A person who when they overdo it is probably a bit irritable or spacey or just not there. I'm afraid I just don't see a lot of positives there.

Some couples adjust - they have a foundation that endures. Others split up. A whole other issue dating....and the question arises why would anyone who is healthy want to date someone with ME/CFS?

 

[sharonklb]

My relationship broke down due to him becoming more of a carer than a partner. We are still friends and he still tries to support me but whilst dipping my toe in online dating, when i did mention (because i was honest about some limitations), the majority either did not know anything and disappeared, some said "oh yes, is that yuppie disease?"! and others explained that they lead very active lives and were looking for someone they could hike/take long walks/go for evenings at the theatre with etc. In the end, i came off the sites because i was then aware that i was asking a lot for someone to date me, with the chance that i may have to cancel or not be well enough to lead normal dating lifestyle!((((

 

[GG]

I am a Man, and have dated, and still get a good amount of interest

GG

 

[Katie]

I met my husband 14 years ago, about a year after I first became sick. When we talked about getting married, I told him to go "sit on his mountain" and meditate. I told him, at that time, I had no idea what was wrong with me and I may never get better, although at that time I kept thinking if I worked hard enough I would get back my strength. My husband is a former ski-lift/chair mechanic and worked at most of the mountains in BC and Alberta. He was an avid hiker, skier and mountain biker. He's travelled all over the world etc. I thought he would come down from his mountain and say no, we don't have a future together. But he didn't. We've been married 11 years now, together 13. It was the right time in his life. He doesn't have kids, mine are adults. We've had lots of adventures and have travelled a lot, sometimes I'm in the wheelchair, sometimes not. He is my best friend and hero. He has amazing patience and has been through hell and back with me in my ups and terrible downs. I count my blessings.

 

[Cort]

I am a Man, and have dated, and still get a good amount of interest

GG

The message is, I think, not to presuppose anything...

 

[Cort]

I met my husband 14 years ago, about a year after I first became sick. When we talked about getting married, I told him to go "sit on his mountain" and meditate. I told him, at that time, I had no idea what was wrong with me and I may never get better, although at that time I kept thinking if I worked hard enough I would get back my strength. My husband is a former ski-lift/chair mechanic and worked at most of the mountains in BC and Alberta. He was an avid hiker, skier and mountain biker. He's travelled all over the world etc. I thought he would come down from his mountain and say no, we don't have a future together. But he didn't. We've been married 11 years now, together 13. It was the right time in his life. He doesn't have kids, mine are adults. We've had lots of adventures and have travelled a lot, sometimes I'm in the wheelchair, sometimes not. He is my best friend and hero. He has amazing patience and has been through hell and back with me in my ups and terrible downs. I count my blessings.

I think you must be a special person to be able keep someone like that around in spite of the limitations that ME/CFS imposes. Congratulations on building that strong relationship.

 

[Cort]

There's a really powerful essay / rumination on relationships and ME/CFS here

• http://www.lunalunamagazine.com/dark/to-the-man-who-would-save-me-from-my-own-life

It ends

You don’t have to like my illness. I certainly don’t. It’s not like I’m living in serene equanimity with this thing that squeezes my heart and erodes my bones. It’s not like I enjoy the weakness or the pain, or the way they lock me out of the life I’d like to have. It’s hard for me, too. Which is why, when I let you in, I need you to see me.

Do not go from me to seek a solution. Do not sacrifice the living in your pursuit of a perfect, unending world. Just be here, now.
Spare me the knight, come to wrest me from the inevitable. I want a witness, a confederate. Someone who will kiss me, laughing, and hold me when I cry. Someone who, when I point, can see the small flames studding the darkness.

I love that last line...

"Someone who, when I point, can see the small flames studding the darkness."

 

[Katie]

I think you must be a special person to be able keep someone like that around in spite of the limitations that ME/CFS imposes. Congratulations on building that strong relationship.

Thank you so much Cort, you made my day!

 

[fdotx]

If the same amount of men as women had this dreadful stuff possibly more match-ups could be made. It would be interesting to know the percentage of men vs women who have found a partnership with another person with CFIDS. I think the energy compatibility of couples is important and this can vary quite a lot even in healthy couples. I'm sure a lot of us could bring so much to the table and there are folks out there who would value this more. Maybe there's someone who is basically low energy or doesn't mind doing things alone or is more of a homebody. Many factors come into play so if you really want it don't give up - there's gotta be someone out there for you.

 

[Cort]

If the same amount of men as women had this dreadful stuff possibly more match-ups could be made. It would be interesting to know the percentage of men vs women who have found a partnership with another person with CFIDS. I think the energy compatibility of couples is important and this can vary quite a lot even in healthy couples. I'm sure a lot of us could bring so much to the table and there are folks out there who would value this more. Maybe there's someone who is basically low energy or doesn't mind doing things alone or is more of a homebody. Many factors come into play so if you really want it don't give up - there's gotta be someone out there for you.

I don't see how it could be otherwise Katie!

 

[Cort]

If the same amount of men as women had this dreadful stuff possibly more match-ups could be made. It would be interesting to know the percentage of men vs women who have found a partnership with another person with CFIDS. I think the energy compatibility of couples is important and this can vary quite a lot even in healthy couples. I'm sure a lot of us could bring so much to the table and there are folks out there who would value this more. Maybe there's someone who is basically low energy or doesn't mind doing things alone or is more of a homebody. Many factors come into play so if you really want it don't give up - there's gotta be someone out there for you.

I agree! Really, there are a lot of people out there who aren't climbing mountains or doing triathlons or being social butterflies. They are just looking for someone compatible - someone who lights them up in different ways.

 

[fdotx]

I agree! Really, there are a lot of people out there who aren't climbing mountains or doing triathlons or being social butterflies. They are just looking for someone compatible - someone who lights them up in different ways.

Hey Cort, great job on the webinar. Isn't trazadone also considered a drug for restorative sleep? Happy travels! Betsy

 

[madie]

People I know with chronic conditions, including being old (my mom is 95) seem to go in one of two directions. The ones I can't get along with are demanding and self-centered, with an expectation of being cared for. The ones I love being around are compassionate and gentle, and grateful for whatever support shows up.

I would certainly date a compassionate and gentle emotionally mature person, with or without an illness.

 

[Cort]

Thanks

Hey Cort, great job on the webinar. Isn't trazadone also considered a drug for restorative sleep? Happy travels! Betsy

Thanks - yes, Trazodone is certainly used quite a bit for sleep. You never know where a drug is going to turn up!

 

[Revday]

When I was healthier I had so many interests, loved to go, people to see! During the beginning of the AID's epidemic I was better at dealing with the dying rather than the chronically ill. But now, I would never even meet me. I became ill at age 32, I'm 60 now. I lost a long term relationship and most friendships because I was too sick. Frankly, I've lost everything because I'm so sick. Further, and not to be too harsh, people who are big caretakers, without pay, are too controlling and become angry at "all [they] do for [me]. Ick... And don't get me started on Caregivers paid by Medicaid insurance. Nightmare. So, I am closed for business, my fun bits have dried up and have blown away, and "I refuse to belong to any club that would have me as a member". - G. Marx. I admit that this is more a defense against the loneliness than a true sentiment or I wouldn't be on this site. Blessings and Peace.

 

[Brenda Flippen]

I met my husband 14 years ago, about a year after I first became sick. When we talked about getting married, I told him to go "sit on his mountain" and meditate. I told him, at that time, I had no idea what was wrong with me and I may never get better, although at that time I kept thinking if I worked hard enough I would get back my strength. My husband is a former ski-lift/chair mechanic and worked at most of the mountains in BC and Alberta. He was an avid hiker, skier and mountain biker. He's travelled all over the world etc. I thought he would come down from his mountain and say no, we don't have a future together. But he didn't. We've been married 11 years now, together 13. It was the right time in his life. He doesn't have kids, mine are adults. We've had lots of adventures and have travelled a lot, sometimes I'm in the wheelchair, sometimes not. He is my best friend and hero. He has amazing patience and has been through hell and back with me in my ups and terrible downs. I count my blessings.

Love this. I am blessed also. Good spouses, partners etc.are hard to find,,,Healthy or not. We just celebrated our 20th anniversary last week. But sometimes I still feel like a burden. Life,,,never know what's next. Rambling, sorry , very foggy these days.

 

[Abrin]

Some couples adjust - they have a foundation that endures. Others split up. A whole other issue dating....and the question arises why would anyone who is healthy want to date someone with ME/CFS?

This is a very interesting (although emotionally painful) question. It is one I've asked my own husband many times. His answer is essentially that he loves my beautiful mind regardless of the fact that it is housed within a broken body.

I do not have severe ME but I do have it bad enough that I can not work a job and it interferes with my day-to-day life which causes my husband to have to take on extra physical tasks.

Luckily for me, he is an intervert so he staying home doesn't make him feel that he is missing out on all the fun in the world, even though I always feel that way.

 

[Abrin]

Love this. I am blessed also. Good spouses, partners etc.are hard to find,,,Healthy or not. We just celebrated our 20th anniversary last week. But sometimes I still feel like a burden. Life,,,never know what's next. Rambling, sorry , very foggy these days.

Happy belated 20th anniversary!

 

[Mary Hamilton]

When I was healthier I had so many interests, loved to go, people to see! During the beginning of the AID's epidemic I was better at dealing with the dying rather than the chronically ill. But now, I would never even meet me. I became ill at age 32, I'm 60 now. I lost a long term relationship and most friendships because I was too sick. Frankly, I've lost everything because I'm so sick. Further, and not to be too harsh, people who are big caretakers, without pay, are too controlling and become angry at "all [they] do for [me]. Ick... And don't get me started on Caregivers paid by Medicaid insurance. Nightmare. So, I am closed for business, my fun bits have dried up and have blown away, and "I refuse to belong to any club that would have me as a member". - G. Marx. I admit that this is more a defense against the loneliness than a true sentiment or I wouldn't be on this site. Blessings and Peace.

I have a wonderful supporting husband but he is almost 70 and I am 57. I've had Fibro and CFS for 29 yrs. Honestly, I don't know how he puts up with me. I never feel like going out and I get so crabby and moody.

 

[Cort]

When I was healthier I had so many interests, loved to go, people to see! During the beginning of the AID's epidemic I was better at dealing with the dying rather than the chronically ill. But now, I would never even meet me. I became ill at age 32, I'm 60 now. I lost a long term relationship and most friendships because I was too sick. Frankly, I've lost everything because I'm so sick. Further, and not to be too harsh, people who are big caretakers, without pay, are too controlling and become angry at "all [they] do for [me]. Ick... And don't get me started on Caregivers paid by Medicaid insurance. Nightmare. So, I am closed for business, my fun bits have dried up and have blown away, and "I refuse to belong to any club that would have me as a member". - G. Marx. I admit that this is more a defense against the loneliness than a true sentiment or I wouldn't be on this site. Blessings and Peace.

Yes Revday - here you are....and that's a good thing - a very good thing.

What a long struggle it's been. I recently wrote to my nephew who is attending the college I attending - UCSC in Santa Cruz...It was where I got sick over 30 years. Looking back as I dredged up those memories was flabbergasted at the promise of my pre-illness life - and afterwards. What a difference even a moderate case of ME/CFS makes.

It brings up another good question...how would your pre-illness self even meet you? How would that even happen?