I made the decision 10 months ago to try and go back out into the working world on a very part-time basis despite the fact that I am on disability for ME/CFS, Fibromyalgia, and Interstitial Cystitis. It is a misconception by many people that you cannot work at all if you are on Social Security disability. That is not the case. You can work, but you can’t earn over a certain amount of money per month. I only work between 12 – 15 hours per week because this is what I thought I could handle. I have discovered over the past 10 months that even working this few amount of hours per week is more than my body can handle. I am on the verge of quitting and if I make it to a year I will be lucky.
Because everyone with ME/CFS & Fibromyalgia has varying degrees of symptoms, some patients can still work full-time while others may not be able to work at all. Then there are those in the middle who can balance their illness with working and can still function. I am finding for myself that each week gets harder and harder and each shift seems to drag out longer and longer because I am so miserable.
I explained my illnesses to my boss and I told him that I could not work anymore than 5 hours a shift. When I work the 6 hour shifts, it really causes my symptoms to worsen. Even after repeated requests to him, and a note from the doctor stating the maximum hours I can work, he is still scheduling me for 6 hour shifts. Today I went in and told them I was not working 6 hours and I would be leaving at the end of 5 hours.
In my own experience, I have not been as down or depressed since going back to work because I was getting pretty lonely but physically the job has been very hard on me. I love working and I wish there were some way I could do it without always having the physical repercussions. Emotionally working has been a positive for me, physically it has been a definite negative. I was hopeful that after having a few years where I did not work and was a stay-at-home mom my body would have been able to handle a few hours a week but I was mistaken. I think deep down I knew this would happen – I just didn’t want to admit it.
Sometimes changing the type of job a ME/CFS or FM patient does can greatly affect their illness and will allow them to keep working. If a patient had a job that was mostly physical, changing to an office job or a less physical job may be beneficial. I had done this and it helped for a while but eventually I had to give up that job also. For others, like me, I don’t think it matters what type of job it is, there isn’t any relief. It is just the working itself and everything it takes to get to the job and to get ready for the day that is too much.
If you have ME/CFS and/or Fibromyalgia, do you still work? If you do, have you:
- changed the type of job?
- changed the number of hours you work each week?
If you had to give up working completely, have you:
- ever tried going back to work?
- been able to continue working?