How to cope with loss of identity and limitations from ME/CFS?

[molecularmimicry]

Hi all!
I am new to chronic illness (3 years) and having a difficult time adjusting to living with a condition that has far-reaching impacts on every aspect of my life. Not to be too dramatic but I had an amazing life and CFS stole it all from me. I don't know how to make peace with something so unfair and senseless.

I used to be a fiercely independent and ambitious person who prided herself on her career. I went through rigorous medical training (4 years of medical school + 4 years of residency), sleepless nights on call, grueling expectations, only for my CFS to worsen not even 1 year into independent practice, forcing me to take sick leave in June. My condition has improved somewhat on leave, but I am scared that when I do return to work, even part-time, it will worsen my condition again and I will have to switch jobs or maybe not work at all (depending on whether I can get back to my baseline from this crash).

I am beside myself with anger and grief that all of the hard work will not pay off. Even if I continue in this line of work, I will only be able to work very limited hours which impact my income (I have $200,000 in student loans). I grew up in an immigrant family that struggled financially and vowed to myself to work hard so that I would never struggle again. I feel like I did all the right things, even though it was hard. To lose the financial security I created for myself because of a random virus kills my spirit.

Even though I know on an intellectual level that this illness is not my fault, I feel so much guilt and shame about the things I can no longer do. I worry that my husband (who now supports me financially) will get tired of this sick me and leave. Besides him, I don't have a safety net (not in contact with parents). I also loathe depending on him and how it changes the dynamics of our relationship.

I plan to seek therapy to learn how to cope but am curious to hear your own stories and journeys.

 

[Jyoti]

Not to be too dramatic but I had an amazing life and CFS stole it all from me. I don't know how to make peace with something so unfair and senseless.

It IS unfair and senseless and I I am glad you found us and joined PR. Because we all know exactly what you are going through and dealing with. It is incredibly difficult for many of us in terms of the expectations others in our lives have of us, people who have no clue how much fortitude and strength and determination and discipline (all of which you demonstrated throughout hour medical training) it takes just to get through a simple task. For some it it ordering groceries. For others, cooking a meal. And still others need all that to simply take a shower.

It is hard to understand from the outside how profoundly we are affected. I often think of how obvious it should be--a lot of us were people who went above and beyond, who pushed ourselves to be our best and to offer the most we could and then some. Why in heaven's name should we suddenly lose that personality trait? Why should be become indolent? It makes no sense but I think it is a protective projection from many--that couldn't happen to ME because if i felt ill, I'd ______ (fill in the blank) while this person (you) seems to be accepting or surrendering to this condition.

There is that--what we encounter from without (and as I am sure you know, from the medical profession as well as from family and friends), and how we hold it within. You are absolutely right and undoubtedly in the majority here when you say that you know it isn't your fault but you still feel guilt and shame. We really do lose important parts of our identities.

I always valued being reliable. It was so important to me to show up when I said I'll show up and to do what I promise to do. To be someone others could count on. No more. And I have learned that lying to myself about what I can do (Oh, yeah, that dinner invitation sounds lovely and I'll be there! Can I bring something?) causes more harm to me and to others than if I am honest and simply say--nope, can't do a thing after 2pm and even if I could, I wouldn't be sure about next Friday. Everything is provisional.

Honestly, I hate that. It is not as big a deal as you worrying about husband and student loans, perhaps, but I bring it up because think this is one of the biggest challenges I face--how to be myself--and the best possible version--when the options are so limited. How do I stop apologizing for something that isn't my fault?

I wish I had a great answer, but for me, practice has helped. I don't give up hope that one day I will be able to do more, but nor do I expect that to be around the corner. And I think that connecting with others whose reality is similar to mine on a regular basis helps me not feel so ashamed. It is crystal clear that no one else--here at PR, for instance--is to blame for their illness. So why should I continue to bludgeon myself with that notion?

I hope that this community can be a source of support and validation for you as you navigate this strange and unwelcome circumstance. We can be there for each other and we can also forgive and understand when that is impossible as well.

 

[hapl808]

Not to be too dramatic but I had an amazing life and CFS stole it all from me. I don't know how to make peace with something so unfair and senseless.

Making peace is a process, unfortunately filled with constant relapses (for me) into anger at the injustice. I also like to think I had a pretty amazing life. Before my last downturn from even moderate (which I was managing with lots of rest without ever accepting I had ME/CFS) into severe, I think I traveled to five or six countries in a year. Now, I haven't left the house in years.

I often think of how obvious it should be--a lot of us were people who went above and beyond, who pushed ourselves to be our best and to offer the most we could and then some. Why in heaven's name should we suddenly lose that personality trait? Why should be become indolent? It makes no sense but I think it is a protective projection from many--that couldn't happen to ME because if i felt ill, I'd ______ (fill in the blank) while this person (you) seems to be accepting or surrendering to this condition.

I think this is so true and raw, that even I couldn't understand it. Unfortunately, this lead to constant cycles of deciding one day that I wasn't going to let this hold me back anymore, then seeing doctors or exercising or PT until something caused another crash and I got even worse. Then I'd become more limited, get more frustrated with myself, and repeat the cycle. Even now I feel like I didn't do enough (lately wondering why I never got a brain MRI, despite MRIs on each knee, ankle, both thighs, etc). Then I look at my records and see that in 25 years I saw approximately 50+ doctors (not including TCM, physical therapists, etc). That feels like a lot. Four neurologists and one neuromuscular specialist, but then I'm like, "Why don't I have a brain MRI?"

I am beside myself with anger and grief that all of the hard work will not pay off. Even if I continue in this line of work, I will only be able to work very limited hours which impact my income (I have $200,000 in student loans). I grew up in an immigrant family that struggled financially and vowed to myself to work hard so that I would never struggle again. I feel like I did all the right things, even though it was hard. To lose the financial security I created for myself because of a random virus kills my spirit.

My somewhat unsolicited advice having dealt with this for a lifetime - and being single (fiance left almost 10 years ago when my health declined): this is a marathon and not a sprint. I don't know what ability you'll have, but I can almost guarantee that a short term focus on 'getting better' or 'pushing through' is likely to do more damage than a really conscious and honest focus on pacing and limits. I kept trying to do more for my fiance because what she was asking was totally reasonable...for a healthy person. I think she just tried to ignore my health issues or thought I was a hypochondriac, so I kind of tried to do the same. I think that combination drastically hastened my decline. I refused to advocate for myself the 'unreasonable' accommodations like needing time completely alone, no noise, no sex at times, etc.

In short, pay close attention to your body and continue to do the things that don't lead to multi-day crashes, but really try to avoid the multi-day crash activities no matter how 'reasonable' they seem to others or even to you.

My condition has improved somewhat on leave, but I am scared that when I do return to work, even part-time, it will worsen my condition again and I will have to switch jobs or maybe not work at all (depending on whether I can get back to my baseline from this crash).

Not sure what part of medicine you're in, but due to Long Covid there is a growing recognition of chronic illness, and a dire need for physicians that truly understand what patients are going through. Out of the 50 doctors I saw, I had some great ones - and not a single one truly understood chronic illness. Not the ME/CFS specialists, or lyme, or rheumatologists, or even neuromuscular specialists. I guess I didn't seem 'as bad' as her muscular dystrophy patients, so she got very frustrated with my reticence to do certain tests (like refusing contrast for MRI).

So if you can manage to focus on an area where your experience is a benefit, limit your hours, take advantage of telehealth, etc. It may not be the life you imagined, but I'm here to say that you can still lead an enjoyable life, or you can 'refuse to accept your limits' and end up like me with a life that I no longer enjoy because I lost almost every aspect that made it fun (social interactions, cognitive challenges, physical activity, travel, even learning).

 

[hapl808]

Also, the biggest problems with my fiance was a constant struggle where I would try to put on a happy face and make the best of things. Then when I would try to explain delicately how awful I felt because of X thing, she would take it as an attack on her and tell me I didn't understand how hard it was for her to deal with my health issues (even though they were quite minor at the time).

So I alternated between trying to be positive for her (which meant she just ignored my health issues and kept pushing me to travel or do stuff), or trying to explain my worries about permanent health declines (which just lead to arguments that if I didn't love her I should just say so, why did everything have to be on my schedule, blah blah blah).

No clue what your relationship is like, but be very careful that you're not censoring yourself or sacrificing for your partner. Not because your partner isn't worth sacrifice, but unnecessary sacrifice is needless martyrdom, not a relationship. And no one likes a martyr until long after they're dead.

On that happy note.

 

[Jyoti]

I don't know what ability you'll have, but I can almost guarantee that a short term focus on 'getting better' or 'pushing through' is likely to do more damage than a really conscious and honest focus on pacing and limits. I kept trying to do more for my fiance because what she was asking was totally reasonable...for a healthy person.

I second this, heartily. I realize that I didn't really let myself grieve for years because I didn't really let myself accept my situation fully. There is such a fine and important line between being realistic and honest about your capacities and giving up. We don't want to give up. Mostly, it's really not even an option. But then, we live in a culture where disease is 'fought.' It is de rigeur to mention the valiant battle fought by every cancer casualty. So it is hard not to be swayed by that mentality. But fighting this thing, rising above it, not letting it get you down---these do not work.

Like @hapl808 I struggled to keep up with some semblance of my old self--and others' expectations of it-- for a number of years and it cost me a lot. I really did not understand that by pushing myself I was hurting myself. Or maybe I did, but I thought somehow I'd get away with it, like I had so often in the past?

And we have to hold this restraint, this commitment to not hurting ourselves by over-exerting, for ourselves and for one another. Precious few of the medical people/healers we see will do it for us. I can't begin to count the doctors I've seen who know something about post-viral illnesses who have encouraged me to exercise more. Not long ago, my dysautonomia specialist told me--"you really have to huff and puff!" I know what happens when I huff and puff. But still, there is a voice in my head not dissimilar to what the doctor is thinking--exercise is unequivocally good! You should push yourself and do more. I have to learn that loving myself and this body entail listening to what it tells me and not what others, who have no idea, think and try to dictate.

I also agree that the need for doctors with intimate knowledge of complex diseases are desperately needed. It would be wonderful if you were able to find a way to work very part time doing something you are eminently qualified to do. Something so few are.

 

[hapl808]

I know what happens when I huff and puff. But still, there is a voice in my head not dissimilar to what the doctor is thinking--exercise is unequivocally good! You should push yourself and do more. I have to learn that loving myself and this body entail listening to what it tells me and not what others, who have no idea, think and try to dictate.

This.

It's quite remarkable. I liked to think of myself as someone with above average intelligence, but the sheer number of times that I re-convinced myself to join a new gym, work out heavier to build muscle, meditate and push through, work more, travel more, etc. Then would hurt myself and decline. Then wait years to recover. Then do it again.

I have mixed feelings on some of it. I grieve more now because I can't even hang out with a friend for an hour without crashing, so my life is quite small. But I was pretty optimistic for all those years because deep down I thought I'd get better - even 10 years in. And I managed to lead some semblance of a life. On the other hand, if I accepted my illness and limitations earlier, I might still be living a life - even if I knew I was never going to fully recover.

Ah well, all academic. Posting on a forum is my cognitive limit these days. Haven't stood up without assistance in years, haven't left the house. So let that be a lesson to you...although exactly what lesson I have no f'ing idea.

 

[Jyoti]

This all feels pretty grim, which is what you are seeking to avoid @molecularmimicry. But I think we are saying: you can learn from our mistakes and make use of the hard won and often too-late-in-coming wisdom we’ve acquired.

You are early on in your illness which means that your chances of recovery are much higher than for those of us who have been sick longer. You can be smarter than we were. No one would have trouble with the suggestion that if you have lung cancer or another disease of the lungs, you quit smoking. Our equivalent is our energy system. It is diseased in some fashion yet to be clarified, but we know it isn't working. Seems kind of obvious, then, to quit provoking it.

Remember, as @hapl808 said--this is a marathon. Those who pace finish. That is hard to grasp when you just want to get back to your life and your self already! And most of us have been there, so who is to say? We've all got to follow our own paths. But... you are at an important juncture and maybe a question to consider is whether the choices you make will be motivated by love or by fear. That sounds a little obnoxious, but i know I let myself try to outrun my fears and only later realized that love--for my poor challenged body and the limited person who remains--is a far more healing--and ultimately happy-- energy to live from.

 

[hapl808]

consider is whether the choices you make will be motivated by love or by fear

May be 'obnoxious' but rings very true for me. I was afraid of losing my career, losing my partner or chance for a partner, losing my financial security. My short term fear of all those things…led almost directly to losing each one of those things…and not for the short term.

 

[Mary]

@molecularmimicry - In your introductory post you describe how you came down with ME/CFS after a COVID infection. I'd urge you to do as much research as you can into long covid. There is lots out there about microclots and long covid. You're relatively lucky in that there is scads of research money out there for long covid. So instead of concentrating on everything you've lost (and I'm not disputing the enormity of that loss at all), I think it would help in more than one way to educate yourself. Learn about potential treatments, new discoveries, etc.

I've had ME/CFS for 25 years. I didn't know about pacing when I first got ill. This was in 1998, there was no on-line ME/CFS community, almost no info about "CFS" as it was known then. I think it's important to use the term "ME/CFS" - because I think part of the reason so little research has been done into ME/CFS is because of the absurd name "chronic fatigue syndrome" - no one took it seriously. Somehow politics got involved too. It's insane.

Anyways, long covid research is in a much better position than ME/CFS in the early years. And also it can build on the ME/CFS research that has been done. So with your medical background, I think you would be a natural to read about all the research, educate yourself and your husband. And I think this would help empower you so you wouldn't feel so helpless.

I've been reading and self-experimenting for most of those 25 years. And I have made progress, I'm a lot better than I was 25 years ago. But I had to keep reading and experimenting. And then sometimes I'd just want to give up so would take a break for awhile but after awhile of that I had to get back to it - I couldn't stop trying to find an answer. I don't think we know where the answer to this illness will come from, but I think there is an answer. We just haven't found it yet.

 

[Rufous McKinney]

A limitation is I can't read these interesting posts, on this interesting thread, because I am too exhausted whatever we want to call it.

I feel loss.

I feel anger.

I don't want to feel loss and anger.

I am grateful, that I can be here today even though I do not get to enjoy reading this thread.

 

[molecularmimicry]

Hi again everyone - from the bottom of my heart, thank you to all of you who took the time out of their day to send words of encouragement (and advice)! Although living with this illness has been extremely isolating at times, I am glad that I found this community and can learn from your collective wisdom.

I really like the line about making choices out of love instead of fear.

I have been wrestling a difficult decision recently - go back to work sooner (in 2ish months like I had told my boss) or extend my leave. If I listened to my body's message, I think it would tell me that I'm not ready to go back in 2 months. But the part of me that wants to not annoy my boss and risk my job security is telling me to just suck it up and go back. Hearing from you that pushing through only made you worse off in the long run is making me reconsider this.

@Mary, it is some cold comfort that there's more research on long covid because so many are getting sick with it. I have and continue to keep up with research on it. I started LDN and am experimenting with other supplements and diet changes to reduce my symptoms. In my opinion, long covid IS ME/CFS in some cases (like mine).

 

[Emmarose47]

In hindsight I look back and am shocked how I pushed myself. At the time I was asking for what I needed but it needed more.
Deterioration is extremely hard/ if not nr impossible to claim back for many of us..
Love yourself for all you are worth.. For u not anyone else.
Be your own v v best friend.

I learnt at the end of it all I was just a number... A cog in a wheel.
Jobs can come and go..
Bodies I hear we only get one

 

[Mary]

@molecularmimicry - I just came across info that on 7/31/23 the NIH launched four clinical trials into Long Covid and that a fifth clinical trial investigating "exercise intolerance and fatigue" is under development. I just posted a thread about this with links to the NIH "RECOVER Initiative" which is doing all this - I think definitely worth taking a look at if you haven't seen it already.

I'm glad to hear you're doing research already. If I had waited for doctors to help me, I would be much worse off than I am now. Plus it helped me emotionally to at least feel like I was doing something, and sometimes it paid off. And I totally agree that many cases of Long Covid are ME/CFS.

This illness is a bitch, made that much harder by the disbelief and ignorance of the medical profession at large, and society in general. I am truly sorry that you've had to join our community, though I'm glad you found PR. I know there are other horrible illnesses, but this is one of the worst, and I think it would make a truly valuable study to find out just how much more difficult it is to cope for patients when faced with lack of respect, validation, whatever you want to call it by the medical profession, et al. Or, rather, how much more bearable it would be if we were taken seriously, treated with respect and just listened to by the medical profession.