Feelings of guilt and ME/CFS

Posted , 10 users are following.

Having been diagnosed with ME for around 2/3 years now, one of the things I just can't come to terms with is being off work. I have had a couple of 2 week stretches off but mostly it's just odd days when I am really struggling to move. I am a college lecturer and feel massive amounts of guilt when I'm off. I know I can't help it but I can't help but feel that others think I'm playing the system and there is nothing really wrong with me. Does anyone else get feelings of guilt associated with their condition?

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  • Posted

    Hi there..Yes I too have had these same feelings. I had them so bad that I had to see a counselor to try to help me cope. The guilt is so overwhelming. My thing was coworkers making snide comments and making me feel bad about being off . I also had some issues with family who just didn't understand what I was going through and always thought I should be up and moving around because "It would make me feel better". I had bad anxiety thinking I was going to lose my job at times. What I did was gave my coworkers and family literature on my condition so that it may help them understand what I was going through. If they didn't want to understand then I just cut them out of my life because their negativity only made my guilt worse. I try to surround myself with things of a calming nature and things that make me happy. I know it probably sounds weird but you will find your own way to cope. Just knowing you are not alone out there helps too. If you need to talk feel free to private message me.

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  • Posted

    Absolutely Hannah!

    I was a busy single mum juggling work, kids etc. My cfs/me is from a car crash and I had a fractured spine so this in a way made it easier for people to understand initially. When the symptoms didn't go away, my busy life did !

    I have more or less come to terms now that I can't do too much and others will judge me irrespective of how I feel. The biggest thing for me was having to ask my children to help me. I kind of struggled for quite a while with that. I got a cleaner in to help and do online shopping, these things reduce my feeling I am burdening others and I feel psychologically in a better place than I was. it takes time, patience and self care to get there. I also had therapy and went to the cfs/me specialist service. I can't work right now and I struggled with that for a long time because I loved my job.


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  • Posted

    hi Hannah,

    I was a QCF Trainer in my local college so i know exactly how you feel. It was only contract so i am now an office admin, which i started in April and by the May i started to become ill.

    I felt guilty everytime i took a day off, and even though by manager was really supportive that made it worse because i constantly felt i was letting everyone down.

    After being signed off sick for 3 weeks i had to make the tough decision to go part time.I have Always worked so this was not easy and trying to explain to my family that this was the best option for me and my health was hard, as they couldnt understand the concentration and commute 5 days a week was tiring too.

    Its been 4 weeks since my hours have changed but my manager has noticed a difference in the improvement in my work and my mood.

    I feel guilty with my family and boyfriend if i have to ask for help or if i cant attend an event. I even feel guilty with my cat when im just too tired to fuss her!!

    Is your manager understanding?

    Are you able to cut down on the number of students course work you mark?

    And What topics do you teach? (sorry lots if questions!)

    Hope today is a good day.


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    • Posted

      My manager is understanding. I already work part time and I can't afford to reduce my hours. My colleagues seem sympathetic but I do worry they might think I go off work very easily. I teach adults on an Access course. I love my job and I have always worked.

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  • Posted

    Oh God yes! Not just work obligations, but work at home and other kinds of work. It is as illogical as it is hard to get rid of.

    The only advice I can give you is joining a ME organization working for us. For instance, there is an initiative trying to show how many of us are 'missing' from ordinary society because of this. One demonstration showed a big square in a city covered in pairs of shoes, each with a little card saying what these people miss most from their healthy life.

    I rather think the problem comes from the fact that science still hasn't come up with a clinical test that proves our illness, and people do not understand it. If it were accepted like MS or cancer, people would see us differently.

    I myself was in a group pilot testing ME, and testing positive on all counts, including mitochondria damage by way of a tissue sample studied by a professor in mitochondria. And I still feel guilty..

    I think we need our surroundings - the public - to get it, and they only will when we have a clinical test.

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  • Posted

    CONSTANTLY. I feel like this all the time, it's so hard. It's rare for me to go for a two week stretch without having to take at least one day off, but I'm having a bad flare-up right now and lately I've been too sick to get out of bed almost every second day. Because nobody ever sees me at my most sick, I feel like a fake. I'm really lucky to have a wonderful boss who is super compassionate and frequently reassures me that I'm doing nothing wrong, but I still feel horrible whenever I have to take time off, especially if I have to take annual leave because I've run out of sick leave (which is most of the time).

    The worst part of it is that the guilt from taking time off makes me sicker (psychological stress makes my physical symptoms worse). So sometimes I push myself to go to work even if I know I'm not really well enough, because if I don't my psychological wellbeing will deteriorate and the only thing worse than chronic fatigue is chronic fatigue plus depression and self hatred.

    I'm so sorry you're going through this, I wish I could offer some advice but honestly I'm just as lost as you are.

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    • Posted

      It honestly helps to know I am not alone in feeling like this. I get myself so wound up being off work, I make myself worse!! I hope your symptoms improve soon. 😃

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  • Posted

    Yes, yes, yes! I know what you mean. I was the office admin for my church and after 4 years left them when I literally couldn't go on. It took 8 months for them to find a replacement but there was someone who was able to keep the place running until they found a replacement. I'm living with my elderly parents and would like to be so much more helpful. My daughter lives out of state and I was too ill to be with her when she gave birth to my grandson. Guilt is just a normal part of this. But I do what I can do to feel the best I can feel so that I can contribute in whatever way I can. Communicating what I can and can't do is always rough. It's very difficult communicating about this with my boyfriend's family. They really party and I show up early in the day and stay for a couple hours and have to leave. I know they don't understand but when I think about it, I wouldn't have understood either until I was in this position. We accept and we make the best of it and sometimes (as time goes on) you may even surprise yourself that you can do what you couldn't do before.

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  • Posted

    hi hannah you shouldnt feel guilty i know its hard not to i had disblief from my whole family doctors and still now people judge me .

    i have had 3 years off work thought i had pretty much recovered then gone back to work and relapsed im devestated but i know now that worrying what other people think will hinder my recovery you really have to switch off from these negative thoughts and remain in a calm state of mind i know its easier said than done but you have done nothing wrong try not take it to heart its unfortunatley another side to this devestaing illness

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