ME/CFS & Fibromyalgia: When Working No Longer Works

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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?
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Comments

  1. I used to teach in the public schools. When I had to stop doing that over 10 years ago, I decided to get a graduate degree. Since I couldn’t go to class on campus, I got my degree online. Then I started teaching online. I think that finding a way to work online, whether it’s teaching or virtual assistant work, or anything really, is a good way to be able to work and not have to “go out” to work.

    • Do you have to have a B.A? I’ve heard some companies hire with just an A.A. I’m close to having my B.A. in Business/Finance. I was diagnosed with fibro and CFS. She’s right you can work part time and still qualify for disability benefits. I tried to go back to work and it was really hard. Not the job itself, it’s being on the companies schedule. I can do certain things, but it has to be at my own pace. Some days I feel pretty good, others I feel like I got hit by a truck. It’s an unpredictable illness it’s hard to be on a strict schedule. I work at home now and it works for me. See my blog bringingmomshome.org

  2. I had to give up my job working in a group home because the illness badly affected my memory, and the fatigue was crushing. I would get up and dressed to go somewhere, and before I made it out the door I would have to go lie down again. Illness affects everyone differently, and over time, I’ve learned to stop beating myself up and feeling guilty for having an illness I did not choose and would gladly live without. I loved my job, and I still miss it after eleven years.

  3. I had to quit graduate school when this all came down on me – I was off everything (including errands) for about 3 years. Luckily for me the rest and treatments are making a difference, and I picked up a 15-hour/week research gig last fall, then added a 5-hour teaching bit this summer. It’s now eating away at my reserves, so it’s a good thing I only have 6 weeks left on both of them.

    The good thing about the research was, like Sherlock, I could do most of it from home – cutting out a commute adds up to quite a bit of extra energy I can use to actually work. I also have been slowly building up a home business – it’s not nearly ready to take over for the income I’ll be losing come September, but it is built so that most of the work has no deadlines.

    It’s definitely a juggling act between mental, emotional, and financial stability and health.

  4. If I had to shower, dress and drive to my job, it wouldn’t be possible. I would never be able to do it because of the extent of the toll me/cfs has taken on my body/brain. I work from my home office. The dynamics are stressful (very dysfunctional brother with my “family” business which is now down to the two of us and our employees). I know my illness has been exacerbated by very severe problems he has created and continues to do so. Also, my husband is not working, he helps me around here, and it’s an added stressor.

    I continue to do what I’m doing because I’ve been in this “career” for 30 years, and even with all of my experience, there are times I can look at a piece of paper (example – a sales order) that needs to be processed and the brain fog is so bad, I cannot take the needed action. It’s those times (even though each day is challenging) that I leave the office and go to bed. This leaves me working on weekends, and I am never near being caught up (another stressor).

    In order to work at all in the home office capacity, everything and I mean everything else had to be eliminated; social life, etc. It was a decision my husband and I made to preserve our family and keep me working. Many days I hate this illness and the way it robs the very life out of each day.

    The fact that your so-called Boss put you down for 6 hours, not 5 – is an indication of an emotionally toxic situation. He does not respect your boundaries. I’m an expert in the area of my brother (in business) and my mother (in life) not respecting my boundaries. It’s either that they don’t care or very self-centered. Anyway, the fact that your Boss will not accommodate a lousy hour on each shift you work, shows what will be in the future. He will not change. He’s made his stand. I’ve heard and seen it all before. Before me/cfs I was not one to suggest giving in and giving up, but I think if you stay at this job, not only will you become increasingly affected physically, some resentments with the Boss and shifts would eventually set in, even if you’re working with a smile on your face, stuffing the frustration. You’ve got a clear picture. There’s something right for you down the road. You gave it a really good shot.

  5. I used t work 2 1/2 days a week that way I could rest for a couple of days a week and then clean the house at the weekend. But the boss changed my hours and had me splitting my hours over 5 days. My work, health and home suffered for this and then added stress caused a total crash and it has taken me about 4 years to get to where I am now. I am afraid to get a job because I know I am unreliable so I have tried to build a business. I am aiming to work about 4 hours a week. The preparation for that will probably take about 6 -8 hours and I think thats all I will be able to handle as well as being a single mum, taxi driver. I have a small studio space I visit on good days that allows me some social contact and have started a part time course so I can try and build stamina. I work on average about 4 hours a month. Im in a poverty trap. I have not been diagnosed with cfs or me or anything. My last doctor just kept telling me I was depressed but refused to give me treatment. Then he called it general debility. I have done a fair bit of research and have changed my doctor, I feel like I am being heard and have suggested cfs. I am getting a series of tests done at the moment and will hopefully get a diagnosis so that I can get some disability benefit and ease this problem.

  6. I am still in limbo with this. I have now been on the sick from my job (as a teacher of pupils with severe learning difficulties and autism) for 7 months. Having previously had shorter absences, I found that upon going back to work, my symptoms quickly increased and I was always incapacitated within a couple of weeks.

    I work 32 miles away from home and even the thought of the journey is hard. Realistically I can not see me being able to return, even on my agreed shortened contract of 2 days per week. The job is so demanding physically and cognitively, there is no way of making it any easier.

    Like so many people with ME, I would love nothing more than to be well enough to go back to work. This is something I can not even contemplate until I am able to walk a few meters down the street without agonising pain and post exetional malaise.

    I have a sick note review with the GP next week and I know there is no way that he will sign me back to work yet. I remain hopeful that this will one day be possible, although I doubt that my current employer will be prepared to wait that long to keep my post open 🙁

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