Personality Changes with ME/CFS


Do you ever feel as though you have major personality changes since you developed ME/CFS?  I know that I can be difficult to live with because of these and it can be very confusing to family and friends.  I know my husband and son feel as though they have to tip toe around me most of the time because they don’t know if something they say or do on a particular day will make me laugh or mad.  At work I am the same way.  Some days, especially those days when I am going on little sleep, my symptoms are flaring like crazy, every little thing a customer does will drive me crazy.  I have caught myself rolling my eyes, being snippy, and being rude at times. 

I don’t mean to be like this and I don’t do it on purpose.  Most of the time I am very friendly, nice, kind, and I get a lot of compliments from customers on how much they enjoyed the service I gave them, how nice I am, and how they love the fact that I actually look at them and talk to them while I am waiting on them.  But those other days – it’s a wonder I haven’t gotten called into the office.  I know it’s very difficult for my family to deal with.  If I had to live with someone who acted like me at times, I would leave.

I am a pretty particular person and I like to have things neat, organized, and very clean.  I hate messes of any kind and I know – when you have children you will have messes.  I have improved a lot since my son came along but I still don’t like dirt or messes, I’m just a little more tolerable of them now.  So if I am having a good day and I am feeling fairly well, and I’m not too sleep deprived, a spill or a mess doesn’t upset me.  However, on days where I am sleep deprived or having major flares of one of my illnesses, the smallest mess can drive me through the roof.

My husband and son have both questioned me as to why one time something bothers me but the next time it doesn’t.  The only thing I can tell them is that when I don’t feel well, everything bothers me because I don’t have any energy, I am totally miserable, I’m in pain and everything seems to be magnified.  If I only have one chore to do that day, it can seem like I have several chores because physically and mentally there’s nothing there.

I used to think that so many of the odd things I have to live with were only experienced by me and I really thought there was something seriously wrong with me.  I would think so poorly of myself until I started to realize that many people with ME/CFS go through the same experiences that I do.  I have never brought this up before on here but I’m sure I’m not alone with the personality changes either.  Please comment if you go through these yourself and to what extreme.

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  1. Oh YES! You are not alone. My dad (83) is a complete grump all the time because of chronic pain. It happened gradually over the years and now it’s pretty constant.

    I’ve had many times that I’ve been an absolute bear to live with. Sometimes I recognize when it’s happening and even then, as much as I try, it’s hard to not get irritated and b*tchy. It’s happening more and more the older I get and I want to make sure I’m not an old grump like my dad.

    I think it also has a LOT to do with our frustration that we can no longer do the things (physically) that we used to be able to do. A spilled mess in the kitchen would have been nothing to deal with ten years ago. Now it takes time and energy that I no longer have.

    Pain and resentment about that pain can definitely cause behaviors that are way out of the norm.

    Good topic!!

  2. It’s not so much pain with me, but I’m just not the same person. I used to be a type-A personality, with high goals and nothing could get in my way of achieving them. Now, with CFS, my goals are very simple — get through the grocery without having to leave in the middle because of fatigue.

    Getting used to “the new you” isn’t easy !!


  3. I copied some of this and sent it to my husband. I’ve been a real pill lately — partly BECAUSE of the pain pills I rely on, because once they start wearing off, watch out.

    But I do see major changes in my mood both when I’m overexerted and when I have a migraine coming (or going). I lie around near tears, exhausted, depressed, and get frustrated if I’ve been having a good week/month because I let myself believe I was finally conquering my clinical depression. Then the headache comes, and I understand — the depression totally lifts when it’s gone.

    And I also understand the feeling of having to give so much energy toward your personal well-being that some small request from my husband or something he does differently from the way I would pushes me over the edge. It’s one more thing pulling on my energy. I’ve only recently begun to understand this thanks to my therapist.

    Hard to keep perspective, but at least we have this awareness in us, even if we don’t keep it at the front of our minds all the time.

  4. Thanks so much for your comments. I sometimes wonder if I should post some of my issues because I don’t know how they will be received but I’m glad to see I’m not alone. While I don’t want other people to suffer, it gives me a sense of relief to know I’m not nuts!

  5. Hi Sandy – I’m too weak, sick and brain fogged to elaborate on the topic, but know that you are definitely not alone on this one. After years of relentless me/cfs, insomnia for 11 years and the stressors of life and this illness, I can vascilate between being angry to breaking down in tears, defeated, hopeless, drained in every sense of the word from this journey.

    This is so unlike the old me. I’m repeatedly apologizing to my husband. Chronic pain, a brain that can’t read a page many times and no sleep has me in a state of my lowest point.

    I know the saying is to “keep the faith” and “never give up”. Today is not a very promising day in that direction.

    All efforts in dealing with these chronic illnesses has left me only worse than I’ve ever been, which is hard to imagine, since I’m very severely affected.

    As always, thank you for your honesty. It removes the thoughts and feelings of being “unique” and that there is no one who understands what I exist with.
    At times, it can be a very lonely battle.

  6. Hi Nancy, I’m sorry that you are so sick right now. I can honestly say I know what you are going through and mean it! Your comment was wonderful and it can be a very lonely battle. Thank God we have each other to relate to. Take care and I hope you feel better soon.

  7. I just love this blog. Although I’m sorry that everyone is going through these problems, I feel a little less alone in my fate in life too. I haven’t been diagnosed with CFS, but I’m positive by reading here that I do have it, along with many other things, and when I read your posts I feel like I could have written them myself. I think CFS is the only thing I haven’t been officially diagnosed with yet.
    Thank you for what you and the other posters do. Maybe someday I’ll have the energy to write a blog myself.
    Gentle Hugs,

  8. I’m only starting to realize that I’m not alone in being very volatile and that it’s not my “fault”. It’s a major effort at times to try not to be moody, grumpy, angry and closed off. I have analyzed my “issues” to bits but fact remains; I may never be able to “fix” these mood disorders. I am also a friendly and open person, but my low stress level makes me hyper sensitive to things such as people whom I perceive of as negligent or nonchalant of me, or other issues of unability to control my life as I would like to. I am lucky in having found a partner despite my illness – someone can actually see through my problems and accept me in daily life situations. Thank you for talking openly about this kind of thing!

  9. I have changed a lot. I use to enjoy jogging daily. I have even started thinking about Suicide, and I am losing my will to live as every day is torture. I can’t even ale it makes much more. I use to be jolly, happy and content before this shit started. I hate living, why can’t I sleep forever

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