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Guilt and Self-doubt... Help?

Discussion in 'General ME/CFS Discussion' started by bethany.s, Mar 1, 2017.

  1. bethany.s


    Hi everyone, I'm new to this forum. I really need someone to validate how I'm feeling...
    Do you guys ever feel really silly and ashamed about the way you are coping? Like, thinking 'maybe I could do more if I push myself' or 'maybe this is all in my head' or 'am I just too lazy'

    I get these feelings of self-doubt all the time. Even when I have felt really awful, I will look back at it several hours later and think 'was it really that bad?' or 'was I just being stupid?'.

    I hope other people understand how I am feeling xxx
  2. Arise


    I get this all the time. It's tricky because sometimes pushing yourself can make things worse and my mind goes back and forth with these thoughts.

    I haven't figured out how to deal with it, so don't have any advice. But I completely understand how you feel.
    Cohen2, MeSci, Hutan and 5 others like this.
  3. Invisible Woman

    Invisible Woman Senior Member

    It is extremely difficult to adjust to the realities of being chronically ill. This is especially true when you have a condition which is so often misdiagnosed and misunderstood.

    I lived with someone for years who had a really painful and debilitating condition (not ME). They refused to accept their limitations and manage their illness and so would often push themselves far beyond their limits. Then they would pay and they would pay dearly. The snag was the rest of the household would too, because they would be left unable to even get themselves to the bathroom. It would then take them ages to stabilize and off we would go again.

    Managing your condition and keeping yourself as well and as stable as possible not only benefits you, but also your loved ones. It eases the burden on them, although neither they, nor you, might like the choices that you sometimes have to make. It isn't easy and it is often frustrating and it can leave you feeling guilty -especially if those around you are not being supportive.

    I don't know how long you have been ill, but if it's not long then I would recommend that you make sure to learn about your condition - especially PEM (post exertional malaise) and pacing. The PR forums have lots of very knowledgeable folk with lots of experience. Knowing as much as you can will help. At least if you are making informed decisions it might help ease the guilt.

    If you can share that knowledge with your nearest and dearest, then hopefully they might be more supportive of you.

    The ME Assoc have a list of fact sheets that might help.

    Always remember that ME is a fluctuating condition, so just because you can shower or make a cup of tea or even just get yourself out of bed today it doesn't mean that you were just being lazy or self indulgent yesterday. Sadly, it doesn't mean you will be able to do it tomorrow either.

    Be kind and take care of yourself.
  4. Sandman00747

    Sandman00747 Senior Member

    United States, Kansas
    Completely normal behavior I would think. About 20 years ago I used to get these same thoughts QUITE frequently. But after about 50 rounds of PEM and 20 or so hard crashes from pushing myself way too hard, even a hard- headed, mule- brained, workout fanatic like myself finally learned that this kind of thinking was not

    only the " highway to hell" but rather the "autobahn to hell." Please don't EVER try to push through this. It will lay you out flat, depressed, angry and broken! Please try and learn from this LONG term survivor. Take care.
    Last edited: Mar 1, 2017
    dangermouse, TiredSam, Mel9 and 6 others like this.
  5. eva luna

    eva luna

    Belgium, Flanders
    The way I see it, is that if you really were lazy and could do more, you wouldn't torture yourself with these questions, you wouldn't care. And you do care, so what you feel is real, although tough to accept...
  6. maybe some day

    maybe some day Senior Member

    San Francisco bay area
    Very normal to feel that way, dont be ashamed of it. They are coping tools that naturally occur. You cant fight the wisdom of your body. It will win everytime. It knows what to do. If your body is telling you to rest more, listen to it. Dont feel you need to prove it wrong. Remember you (and everyone here) did nothing to purposely get cfs. We werent given a choice. So, close your eyes, relax, deep breath, and tell yourself "its going to be ok... I earned this rest, I earned this sleeping in"
    Heck, I'll drink a glass of wine or a beer and feel I earned it.
    Last edited: Mar 1, 2017
  7. Cheesus

    Cheesus Senior Member

    I get this. I think i should somehow be trying harder, that I am somehow responsible for my inability to get well. It is completely irrational, but at least you know that you're not alone in that irrationality :hug:
    dangermouse, Mary, lauluce and 2 others like this.
  8. Snowdrop

    Snowdrop Rebel without a biscuit

    I wasted a great deal of mental/emotional time and energy agonising the way you describe when I was about your age.
    There was no internet back then and this illness was derisively termed 'yuppie flu' (as opposed to the derisive 'chronic fatigue').

    I thought @eva luna hit the bullseye with the very valid point that if you were not so sick you'd be getting on with your llife and you would not be asking yourself these questions.

    It takes quite some time to come to grips with this illness. Be kind to yourself.

    And now you've found others here on PR who do understand. :)

    dangermouse, slysaint, Mel9 and 7 others like this.
  9. belize44

    belize44 Senior Member

    When I hear this self talk happening I always attribute it to my dysfunctional upbringing, where feeling ill was invalidated, and the ill person was accused of "trying to get out of doing things." As a former high achiever I can see how ridiculous this is, but echoes from the past are hard to turn off. So I know what you are feeling now!
  10. lauluce

    lauluce as long as you manage to stay alive, there's hope

    I fee
    I understand perfectly how you feel, as I feel exactly the same. So many times and by some many people over the years I've been told I'm lazy, lying, not doing enough effort, told that this is psychosomatic, all in my head or just my imagination or pessimism that it is almost impossible to not think for time to time that they might be right! but that's just how the human mind works I guess, this should happen to everyone of us. WE NEED TO COMBAT THIS TOUGHS, the're and abostacle in our search for answers and our plea for real help from the medical establishment and governments
    dangermouse, Mary and bethany.s like this.
  11. Mary

    Mary Moderator

    Southern California
    @bethany.s - Yes, I feel the same too, very often! I also get it from the other end - when I overdo it (which doesn't take much at all!) and crash, I blame myself for that too. I've apologized to people countless times for having to cancel things because I was crashed or sick, and always feel like I've done something terribly wrong, when all I am trying to do is survive, and get done what I have to (e.g., grocery shopping)

    It is a little bizarre - even though I have lived with this for 18 years, part of me still doesn't believe it's real, and that I am doing something wrong here. Though when I try to imagine functioning as I used to, able to work, exercise, etc., I can't. So part of me at least knows ME/CFS is real! You have lots of company here j--
  12. Old Bones

    Old Bones Senior Member

    @bethany.s I became ill before the internet, so the only information about ME I was exposed to came from rare and inaccurate newspaper/magazine articles. I was more fortunate than most, because I was referred, very early, to knowledgeable medical practitioners. One of these was a psychologist -- recommended to help me come to terms with the impact of having a life-altering chronic illness. I remember asking at one appointment: "Don't you think it's just my stinking attitude?" His response: "There's nothing wrong with your attitude -- you're ill." It would be wonderful if you could find someone similarly supportive.

    The feelings of self-doubt you described are common. I've often wondered if they stem, in part, from a type of amnesia necessary to help people cope with painful or difficult circumstances. Currently, one of my worst symptoms is multiple layers of chronic total-body pain. Yet, during the periods it is less intense, if someone were to ask me to describe the pain, I'd have difficulty doing so. Similarly with other transient symptoms, I'm often not aware they are gone until they come back.

    Do you keep a diary to track symptoms? Doing so is something many doctors recommend, but it is something I've struggled with, not wanting to become a "professional patient". Nevertheless, it can be helpful in making connections between what you do, and how you feel.

    The secondary benefit is that in situations where you feel the illness is all in your head and that you could do more by pushing yourself, a quick look at your diary will prove otherwise by providing a reminder of how you were actually feeling at the time. This might help to lessen your feelings of self-doubt, and keep you from pushing yourself more than you should, and ultimately doing harm.

    Good luck. Over time, your self-image should become more accurate. And, by better matching your activities/lifestyle to the genuine limitations the illness imposes, you'll increase the chances of recovery. I sincerely hope you are among those fortunate to recover, sooner rather than later.
  13. arewenearlythereyet

    arewenearlythereyet Senior Member

    Yes you are absolutely normal thinking this.....I think we all do.

    Just keep reminding yourself that you never asked to be ill. If people can't see how you are coping so it's always difficult for them to know. Well that's what I tell myself anyway. Welcome.
    dangermouse, Mary, Mel9 and 1 other person like this.
  14. TiredSam

    TiredSam The wise nematode hibernates

    Nope. I'm coping with this illness the best I can - I've done the research, made a plan and am living it. The plan involves a lot of rest and saying no to stuff, but it is the best way for me to remain as functional as possible for myself and those around me. This allows me to feel smug, self-satisfied, and to congratulate myself regularly on being such a splendid chap. Don't do guilt at all, sorry.

    Anyway, I tried pushing myself at the beginning, I'm sure we all did. It didn't work so I stopped doing it.
  15. tudiemoore

    tudiemoore Senior Member

    Southeast U.S.
    Hello, Bethany--I understand how you feel and many, many people here do! I had "strange" health symptoms off and on but had a supportive doctor. Tried all kinds of health treatment, supplements, irritated and puzzled friends and family.

    Two things happened that brought the reality of this home to me. I found Phoenix Rising as I wandered after giving up and began to identify fully with symptoms other people had. It was such a relief to see, "Oh, somebody else has this, wow!"

    I tried to continue work and grad school but one day half way through a day of my routine I was hit hard with the draining fatigue I had come to recognize and almost collaspsed (can't spell anymore!) When I got to a place where I was alone I cried for a very long. I gave in to ME/CFS then.

    I gave up hoping friends and family would offer me the same support most of them offered to almost anyone else sort of!

    I was only able to complete my degree because my advisor supported me as I took baby steps to do this. I changed jobs and found something flexible. I found that when I could be very direct with situations such as this if I needed help I got it.

    I realized that I had to take care of myself whether friends and family "believed" me or not. Gradually I can accept having this life instead of the one I had planned. But yes, even now, I have a day, or even an hour, when I feel okay and wonder if this is real and why it's this way.

    These are simple things for the most part but this is how I came to accept and be far, far more kind to myself, Bethany. Let yourself be supported by those who will, though they may not be friends and family. They may be people around the world who have a common thread that ties them together.

    I am not a country music fan but every now and then I say to myself words from a song I heard, "Some days are diamonds and some days are stone." Oddly enough I can smile, a little, and give in to ME/CFS all over again.
    Mel9 and bethany.s like this.
  16. bethany.s


    Thank you so much for this amazing encouragement. It really does mean a lot that other people understand what I'm dealing with. I'm honestly so terrified; I have my GCSEs in 2 months!!! I'm working at home currently because I find that while I can do small bursts of work, if I go to school by the time I get there I am too exhausted!
  17. lauluce

    lauluce as long as you manage to stay alive, there's hope

    I have temporaly gave up trying to find a treatment, as that task has proved IMPOSSIBLE in Argentina, for a big number of reasons, namely doctors don't even know what ME or POTS and aren't willing to learn, getting very VIOLENT when one ask politely that they do some research. Also, practically any supplement or probiotic or similar is impossible to get here, stores only sell the most basic vitamins -for example it's impossible to get D-ribose or coenzime Q10. Nobody is diagnosed, the government and the medical comunity is not aware of ME and so no effort is done to gater statistics or provide help for those suffering from it. I decided to star visited a trustworthy and well prepared psychologyst to help me cope with the disease and accept the reality that I must accept that it's at least by now part of me and I can't do anything about it
  18. dangermouse

    dangermouse Senior Member

    Hi Bethany,
    I'm new to the forum too. I've had ME for around 11 years and still beat myself up (occasionally) for being ill and wondering what I'm doing wrong...even though I know (deep down) I'm trying my best. Over the years, due to my motivated nature and desperation to be better, I've pushed myself beyond my limits and I've had some terrible relapses...each time taking longer to improve and never getting back to where I was prior to pushing. Even then, after the horrendous painful energy sapping relapse, I wondered if it was as bad as I thought and (incredibly) began to plan what I could try next!

    I struggle with feeling guilty. I have always (prior to this damned illness) been busy and worked hard. I was dependable. I was reliable. Capable. Ambitious. It's really difficult to accept that I can't be that person right now. I don't like that I am reliant on others to do everything and at times I feel useless and wonder what I am...if that makes sense? I was a nurse and before that I was an Administrative Assistant, I was (as is the norm) defined by my job...the first thing a stranger will ask me is "where do you work?"

    I think what you describe is probably a common experience, especially early on after diagnosis.
  19. notmyself

    notmyself Senior Member

    Hi,i've been diagosticated very recently, i'm just 25 so i'm very young just like you..after the diagnostic i was very depressed and almost commit was and it still is very hard for me to accept that i will not be able to be like i was again..The thing is you have nothing to feel guilty for, is a blind man guilty for not seeing??If you do have ME you need to accept the fact that is absolutelly not your fault and all you can do is to rest and have faith..We are young and if we do the right things now in the begining, we have a chance to be healthy again!!
    Jennifer J, lauluce, TiredSam and 2 others like this.

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