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Adrienne Dellwo

Fibromyalgia & Chronic Fatigue Syndrome's Impact on Your Job

By July 15, 2009

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In today's society, we're largely defined by our jobs. It's one of the first questions people ask each other upon meeting -- "What do you do?" The vagueness of that statement says a lot: in spite of how non-specific the question is, we all know that querent wants to know about our job.

Some of us with fibromyalgia and chronic fatigue syndrome have had to change jobs or give up working altogether. Others are able to keep plugging away, either with or without reasonable accommodation from their employers.

I left my TV news career for several reasons: fibro fog had eroded my skills considerably, the stress was making me unable to function, and I didn't have the energy to continue working and be a mother. For about 2 weeks before making the final decision, I cried every time I thought about it. I worried about finances, losing my identity, missing the social aspects of work. It was a tough decision. I'm fortunate that, as a writer and researcher, my job skills translated into something I could do from home. I know a lot of people aren't so fortunate.

Are you still working? Have you altered your tasks, deadlines, schedule, or career plans because of your illness? What job modifications have helped you? If you've stopped working, what was it like coming to that decision? How have you come to terms with it, emotionally? Take the poll, and leave your comments below!


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July 15, 2009 at 2:18 pm
(1) kimmieCollas says:

i gave up my job in july 2007, then was forced to take a job at a fast food restaurant when my husband lost his job and couldn’t find another one. After he found a new job, i lost mine, but i’m now being forced to go back to work to try to survive. After insurance and child support deductions, his take home is minimal to say the least, and we were barely surviving on what he made BEFORE the deductions kicked in. Anyone who says money can’t buy happiness has never tried to live on the kind of money you can make as unskilled labor . . .

July 16, 2009 at 3:57 pm
(2) Christine says:

I am still working but have had to make major sacrifices to keep working. I cannot participate in any activities during the week and need one day of the weekend for rest. I’ve been unable to take on the responsibilities that have allowed my co-workers to move far above me. While frustrating, I also have more appreciation for the life I have and have had to recognize it’s not all about a career. In the end, what will my co-workers who work 24/7 feel about how they spent their life?

July 17, 2009 at 3:41 pm
(3) Penny Sheppard says:

I haven’t worked in 5 years and I am still trying to obtain social security disability. I have had to redefine myself at so many levels. I have found that over the past few months, my brain fog is lifting. Therefore, I feel hopeful about being able to work in the future and beginning some “minimal” work (5 hrs a week) and have some ideas for business/non-profit org. I miss the work place dearly. I am very people oriented and being homebound most of the time does not help my morale.

July 17, 2009 at 3:41 pm
(4) David says:

After “living” with CFS for more than two years I was down to working only 8-10 hours a week. Lucky or not so lucky for me I ran my own buisness. I did have good workers but they were unable to keep things going at the level when I was well. I had to sell the buisness and retire at 49. Social Security Disability has been a nightmare and I am still waiting for a hearing.

July 17, 2009 at 3:55 pm
(5) Mummylady says:

I have been very lucky to keep on working as a rare materials cataloguer at a research library. I made sure I had a good chair with arms and a real workstation ergonomically correct and all. I get help if I have to lift things down or pick things up, and most people very cheerfully do things like that for me if I ask them to. If I am flaring or having a bad fibrofog day (I get bad aphasia) I just tell people I am having a bad day. I am very lucky because I was able to keep working and have a very large support group of co-workers.

July 17, 2009 at 4:41 pm
(6) Tracie says:

I am still working as a teacher. It has been hard because my co-workers and administration have not been so understanding. They think I am faking my limitations and often think I am just being unsociable. I actually had a coworker tell me she thought I should stay home or quit working if I am feeling so miserable so often. I am not ready to give into this and give up my life. I am very effective and had 100% profficiency this past year. Teaching does take a lot out of me and I often come home and have to take a nap in orderr to interact with my family. Housekeeping expectations have fallen off. My social life is almost non-existent. While my children are grown, my husband and I have taken on raising a young autistic boy. It is sad to admit that there are some days he covers me up while I nap and stays close by in case I need any help. No 8 year old should have to do this. During the school year I have to take Saturdys & Sundays to recharge.

July 17, 2009 at 5:15 pm
(7) Melissa says:

I am still able to work as an administrative attorney for the federal government. This job is perfect for an attorney with FM. I don’t have the stress of dealing with clients or tracking billable hours. My job is sedentary and involves very little travel. I’ve been in the job so long that I can answer routine questions even through my worst fibrofog. (BTW – Cymbalta has almost eliminated my fibrofog; unfortunately it makes me drowsy.) My boss and co-workers/subordinates are fabulous about doing the little things that help so much, like putting events on my calendar or sending me written updates on cases rather than giving me the update verbally. And I have plenty of sick leave to use for those days when FM just gets the best of me.

I honestly do not believe I could work if my job involved any amount of sustained standing or required me to think quickly on my feet.

July 17, 2009 at 9:28 pm
(8) Karen Twardowski says:

I stopped working for a while had to go back to work. I am single and have no one else to support my children or I. I lived off child support then and some government assistance. Then the government didn’t want to help me out anymore. I went to work part-time, and now hold a full-time job. Fibromyalgia has impacted how much I can make. I have to live with my parents now, because I can not earn enough to live alone. I live a totally different life than my co-workers who constantly have something to do after work. While I come home and do very little. I can’t do all the running around they do and pick what social activities I choose to do. I feel like an outsider because of my fibromyalgia.

April 20, 2011 at 2:10 am
(9) Sarah K. says:

I was reading your comment and that’s exactly how I feel. I’m 37 and single, unable to find a life partner due to my limited social skills and fatigue. I lost almost all my friends one after the other and am quite lonely. I changed jobs a lot and eventually quit for a long time. I’m not eligible for disability and if I were they won’t pay that much so I can live off it. I lived with my parents too for a few months but unfortunately, they both suffer from mental illness and they’re verbally and even physically abusive. I don’t have anyone else to rely on for help. I ran away from my parents and tried to live on my own, but it’s not going to work out. I have a part time job now that can only pay for my food. I’m so scared since I know I have to go and live with them and get tortured by them, but what else can I do? Any suggestions?

July 17, 2009 at 11:11 pm
(10) kathy says:

Trying to work is one of the most difficult aspects of FM. I tried to work as a pharmacy tech, but I was expected to work 3 or 4 days a week. The job required time on my feet without sitting except for a lunch period. The pain was unbearable, and luckily I was transferred to another job and now work only two days a week. However, I still must be on my feet all day without a break except for lunch. It is still difficult but bearable. By the time I get home, I am unable to function like “normal” people. I am completely wiped out. Not working is out of the question. I feel lucky to have a job.

July 18, 2009 at 3:46 am
(11) Doris says:

I was diagnosed with FM 16 years ago and then 10 years ago with Chronic Pain. I had to give up a job I loved. I still miss it. I was an active, energenict person. I feel useless now. I was told it started when I was in a fatal car accident in which my Mom died. I never did get over it. I think all of us want our lives back. I know I do, but as time goes on that’s doesn’t seem like it’s going to happen. I’m trying so hard but sometimes it just doesn’t seem like enough. I miss family functions and more time I could be spending with my daughter. I feel guilty about that. Unless you have it you really don’t understand how it affects your life every day and night. God Bless all of you and I hope and pray doctors and researchers will soon find a way to really help us with this dipilitating decease.


July 18, 2009 at 5:52 am
(12) Irene says:

I worked for 37 years for the same company and I liked my job and the people I worked with. It was a stressful fast-paced environment. The last 7 or 8 years I really pushing myself because I was so exhausted. I became depressed and more exhausted. My dr. put me on 4 hrs. a day and I did that till I turned 55 and then I took an early retirement. Staying home has helped me feel better physically. I do miss working—I feel that I do not contribute to society and it can get depressing. The worst part is that I look healthy! Most people really do not understand this illness although they say they do.

July 18, 2009 at 11:17 am
(13) Christina says:

after being on private disability for four years I had to go back to work when the policy expired, and soc.security denied two appeals. I had a clean house then. Now I have to work full time but I dont leave my door or curtains open because my place is a mess! I drag myself to work then collapse evenings and weekends. My pain, stiffness, and cognitive functioning has increased so much that I take four different medications for chronic pain and sleep. My children no longer have a mother, they get whatever I can throw together before I need to lie down. It goes without saying I have no social life.

July 18, 2009 at 3:45 pm
(14) Dianne says:

I developed ME/CFS straight after going through treatment for Breast Cancer(Lobular). I have not been able to return to work for the last 9 years. I just would not be able to cope, or do justice to any form of job. The symptoms are just so vast, and very unpredictable. I can’t sustain anything and have to monitor every thing I do.

July 18, 2009 at 6:45 pm
(15) carla says:

Every comment sounded like me. I am still working, ready to begin my 40th year of teaching. I drag myself to work…drag into bed by 5PM. BUT, I still love my job and think I am better when I work. The summers are hard n me because I just sleep and do light housekeeping, ceral for dinner and back to bed. As someone else said….no one really understands but those of us who share this terrible illness.

July 19, 2009 at 8:51 am
(16) Kimberly says:

I had to leave my very demanding job (financial aid director at a four-year university) almost one year ago. I thought it was just the stress, and I was working 10-12 hour days and some on the weekends. I was not diagnosed with anything yet, but had symptoms for years. I have four children, two of whom are autistic. Who wouldn’t have stress with all that? But after I resigned, fully intending to go back to work, my physical condition kept worsening. I was diagnosed finally with FM and CFS. I really do not miss my career because I had no free time and the stress was constant. However, I wish I could work at something when I have good days. The financial drain on our family has been horrible and my husband works all the time doing anything to bring in extra funds. I do miss the social part of work, even though I couldn’t do much of that with the work load. I work out almost every day and eat right. Sometimes that and a shower is all I accomplish in a day. I realize I will never get my former life back. I have lost that. But
I accept it now and have turned my attention to writing which is something I love. I am a very spiritual person and believe that this has happened for a reason. Maybe I have a wonderful opportunity that I would never have found when I was covered up with work from a fulfilling (I liked the people and results) career, but one in which my efforts were never appreciated. Yesterday is over and it is time to discover other talents. Very few people understand or support me with my illness, but for the ones that do, I am grateful. It gets tiring being alone most of the time, but I guess that is just part of what I need to go through to learn God’s next plan for me. Blessings to you all in finding a way to make it financially and emotionally.

July 19, 2009 at 9:18 am
(17) Kimberly says:

When your hut’s on fire…….(This applies to me and I thought some of you may find it applies to you too.)

The only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him.

Every day he scanned the horizon for help, but none seemed forthcoming. Exhausted, he eventually managed to build a little hut out of driftwood to protect him from the elements, and to store his few possessions.

One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger.

He cried out, “God! How could you do this to me?”

Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him!

“How did you know I was here?” asked the weary man of his rescuers.

“We saw your smoke signal,” they replied.

The Moral of This Story: It’s easy to get discouraged when things are going bad, but we shouldn’t lose heart, because God is at work in our lives, even in the midst of our pain and suffering. Remember that the next time your little hut seems to be burning to the ground. It just may be a smoke signal that summons the Grace of God.

“The will of God will never take you where the Grace of God will not protect you.”

January 19, 2012 at 5:00 pm
(18) Claire says:

I have a career in senior management for a large, fast paced business. My partner is out of work following redundancy from an executive position. Financial responsibilities and concerns about security etc mean that I continue in a demanding, stressful job with often long hours but every other hour is spent in bed sleeping or resting. I have no evenings, weekends, family or social life. My partner and young daughter have had to accept that I usually ‘have nothing left to give’ and are understanding and supportive but I am letting a relatively ‘normal’ life pass me by. Some would say I have a choice. Doesn’t feel like it to me! Thankfully, I live my job. Can’t imagine how I would cope if I didn’t!

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