Continuing to hold down a job is tough when you have fibromyalgia or chronic fatigue syndrome. If you're lucky, you have an employer who is willing to accommodate your illness, especially since the American's with Disabilities Act (ADA) is open to interpretation. Proving you qualify for reasonable accommodation, and what is reasonable accommodation for your illness, could be a long, hard legal battle. A new amendment to the ADA, however, could help us tremendously.
Part of the ADA's definition of "disability" has always been "an impairment that substantially limits one or more major life activity." The definition of major life activity is now expanded. It contains two lists - one of abilities and one of major bodily functions - that all are now considered to impact major life activity.
Abilities List
Impairments of these abilities are specifically covered under the ADA amendment: caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating and working.
Major Bodily Functions List
Impairments of these bodily functions are specifically covered under the ADA amendment, even when they're not readily apparent from looking at or talking with someone: functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine and reproductive functions.
Also, the amendment clarifies that an impairment that's in remission does count as a disability, as long as it would be an impairment when active. That means we're covered both during and in between flares.
What is "Reasonable Accommodation"?
Employers are required to provide reasonable accommodations to their employees with disabilities, but what would be a reasonable accommodation for us?
That all depends on which symptoms limit your ability to do your job. It could mean:
- A more comfortable chair
- Dimmer lighting
- A glare screen for your computer
- Moving your work area farther away from an enterance (away from cold bursts of air)
- Later start times
- Longer, more frequent breaks
- Reassignment to a different position
- An assigned parking space near the door
- Providing instructions in writing instead of verbally
This is only a list of examples - think about measures that would make it easier for you to do your job, then talk to your boss about them.
If you think you're being discriminated against or denied your rights under the ADA, contact your local Equal Employment Opportunity Commission or call the national number: 1-800-669-4000 (TTD - 1-800-669-6820.)
Have you found accommodations that help you keep working? Have you had to fight for your rights? Are you happy about the amendment? Share your opinions and experiences by leaving a comment below!
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The biggest accomodation I usually need in my job is giving instructions in writing, or when I can write them down. I’m forever telling someone who stops me in the hall to ask me something to please send me an e-mail. I’m honest with them, that it will be gone from my mind by the time I get back to my desk.
I always tell a new boss, if it’s not in an e-mail, or you don’t see me write it down in my notebook (in my notebook, not on a sticky that can get lost), assume it isn’t going to happen. I just don’t process short term memory well. It’s nice to know that I now have official backing for that to be a job accomodation. It’s an easy one to make, and it allows me to stay on top of all the various little details that make up my job.
I agree with Jodith…I have to write everything down for myself or I will not remember it 5 minutes from now. I am lucky to have an employer who does understand and co-workers who have learned how to recognize when I am just having a really rough day without my having to say it.
I have a pretty flexible job. When I was diagnosed I moved laterally into a different position at work. I can’t move up but am employed and insured. ( I was training to go into sales but am instead support staff, low pay) The job is flexible, I work on my own with no supervision. I come and go and stop and start at my own pace. Bad days I move around less, good days I do the physical stuff. If I can’t make it to the time clock I can write my time down. If I am sick (often catch stuff working with lots of people) I stay home even if my sick days are used up. Every couple of years I have a ‘bad’ spell where I can only work a couple hours at a time if that and can take work home. How I got this lucky I don’t know! And I get to work in design field with fabrics so it is still close to what I love. The people around me are very supportive ( I am very open and vocal about my conditions) and fun to work with so they fill most of my social needs. I still wish I could stop working and just heal, but this is the next best thing. They always just say ‘anything you need just let us know’. I have a curtain on my office door so I can nap, a better chair and a keyboard and mouse tray that is low and adjustable so it doesn’t bother my shoulder or neck spur too much. When I am there I give 110% and when I am off they leave me totally alone. I wish the same for all!
I don’t know what kind of accomodations could be made for me. I am a full time student. I have missed so many classes already. At the same time I am getting worried about the rest of my schooling. I have never been more tired. At this point I don’t know how I am going to make even through the semester. For future classes I will try to get all online classes. Does anyone have a suggestion for accomodations that may be helpful to me at the present time?
AJ,
I can only imagine how hard it would be to get through school while battling this kind of illness. Without knowing much about your situation, I don’t know how much I can help, but I’ll give it a try.
My first thought is taking fewer classes. I had to face that disheartening decision in college because I had carpal tunnel disorder and had to work to support myself. I had to find the right balance of work and school and just accept that it was going to take me a little longer to graduate.
Also, how do you get between classes? Is there some way you could do it with less energy expenditure? Something like a razor scooter or a motorized scooter might help (although I understand these options could make you uncomfortable.)
Have you talked to your professors about your illness? They may be able to help you with things, such as providing written outlines of lectures (if they use them) or allowing you to email assignments to them if you can’t make it to class. Does your campus have note-taking services that you could take advatage of?
Also, your campus should have some office that deals with students who have disabilities. Don’t feel bad about going there and using that resource – just like the ADA, those kinds of offices are there to make sure people like us have equal access to education.
I have to think that taking classes online would be much more managable for you, so I hope that works for you in the future!
Adrienne,
Thank you for taking the time to give me ideas. I did talk to people at the school the other day who deal with students with disabilities. I have to fill out a ton of paperwork before they can even tell me what my options might be. I have been in contact with my teachers and they have been working with me so far. I don’t know how long that will last since I have missed almost two weeks straight now. My school is an all walking campus so I can’t drive to the buildings I need to go to. The only way around that is if I got a handicap tag.
I am at a loss at this point with what I should do or can do. I don’t want to drop out of this semester. The medication they have put me on just seems to make me more tired. I take it one day and the next day I am more drained than when I took the pills. It is like a never ending cycle. I don’t mind taking the pills if they didn’t kick my butt so much. If I stopped taking everything right now it would take a couple of days just to get back to my normal tired, pain filled body. It has only been in the recent years that I could get enough financial aid to go to school full-time. I know that taking less credits would be easier on me, but it already feels like I have been in school forever. I am in my 6th year of schooling and still have yet to get a degree. I’d like to be done before I turn 30.
Multiple people in my family have been diagnosed with fibro prior to me so I have done reading on the topic before. I never understood why I always read that people may become depressed when diagnosed with fibro. I kind of understand a little now though. I have had pain for years and no blood test or x-ray could give a reason why. I have a reason now, but there is no way of fixing it. I always thought that someday a doctors will pay attention enough that they would find out why and I could fix the problem. Now it seems that we found out why I have had pain since I was just a kid, but there is nothing that will really make me feel better. It is a bit of a bummer to know that you hurt and you will always hurt.
Adrienne,
The doctor last gave me elavil, ultram, and provigil. The only thing I am still taking is the ultram. Not too regularly. I usually wait until I really can’t stand the pain anymore before I take medication. The elavil didn’t make me tired, but once I did go to bed I would be sleeping for at least 10 hours.
AJ,
Do you feel better when you take the medication regularly? If it helps you function, it might be a good idea to follow a regular schedule.
Supplements can make a big difference, too. Start one at a time and give it a week or so to see if it’s helping, and also if you have any negative side effects. I’d suggest starting with Vitamin D first, then adding a B complex, and then magnesium or magnesium malate (watch for intestinal problems with magnesium). 5-HTP and SAMe are both popular ones for raising serotonin levels, but I prefer theanine and rhodiola, because they work on several of the transmitters we’re deficient in.
Adrienne,
The elavil was suppose to help me sleep better, and it didn’t. Since I started taking it I have been more exhausted than I was to begin with. I take the pain pills when I really need them. I don’t want to take them too often. Last time I was taking pain meds it was for my teeth. I got such a high tolerance for them that when I got in to get teeth pulled and they knocked me out I woke up in the middle of the procedure. Until I am done getting teeth pulled I don’t want to get too use to the pain meds. I have been deeling with the body pain since I was about ten years old so most of it I can deal with just because I have always made myself. The pain has just gotten worse in the last month or so and that is how my doctor came to the fibro diagnosis. I went in when I was in extreme pain, and my new doctor really knows her stuff when it comes to fibro. Plus this is the first time in a long time I feel my doctor listens to me and doesn’t treat me or make me feel like it is all in my head.
I have a hard time swallowing pills. Some of the bigger pain pills that I have taken I have had to crush up just to get them down. I have gotten pills as small as birth control stuck in my throat. It is hard to find the right medications that not only work, but I can swallow. It is the same with vitamins and supplments. Here and there I try to drink ensure just so that I can get some of the vitamins in my system that I know I am probably lacking. Because of the issues I have had with my teeth I don’t eat a lot. There are very few things I can eat. (My teeth break for no reason. It’s a good gene that got passed down to me.) Most vitamins are just too big for me to swallow.
Adrienne,
I haven’t tried yogurt. I know I have had times where that is almost the only thing that I can eat. I just went though an icecream phase actually. I have to get blood work done soon. My doctor wants to check my thyroid and iron just to make sure she isn’t chasing the wrong thing. It has been a few since I have had those checked. My last doctors had me try cymbalta for pain. That is the worst medication I have ever tried. I took one pill and that was enough. I have never been so sick. My brother had been on it before me and it gave him a ton of problems. I am curious now what kind of studies they are doing with fibro. I hadn’t heard of fibro till my mother was diagnosed and now I hear about it all the time. I find that the more I read the more I want to read.
AJ,
I haven’t tried Cymbalta, but I had a very bad experience with Lyrica. They help a lot of people, but a lot of us can’t tolerate them.
I hope you can experiment with some supplements (sublingual or injectable), because for many of us they’re the key to feeling better.
Hello Ladies.
I have read your comments and I am so sorry to hear about your pain. I was diagnosed with Fibro., CFS, IBS and depression nearly 9 years ago. I was on a total of 5 medicatons. After 3 months of being doped up, I decided this was not going to work for me. I researched all of the conditions and determined a few things that I would have to begin doing / not doing. I eat red meat no more than once per week (if that). I walk regularly. I don’t eat a lot of saturated fat. I rarely eat prepackaged foods. I drink my water. The most important thing that I had to do…was throw away my stress. It’s not easy to do, but it is the most important thing that you can do for your health. All of my flare ups in the past 9 years I can thank to stress. Learn your body. Know what is going to cause your pain and STAY AWAY FROM IT. You’ll see that if you invest in yourself before anything else, you’ll be able to easse your pain. At least make it livable. (I say that as I’m on the verge of a migraine.) I’m having a CFS flare upi right now, that’s how I stumbled onto this. Best of luck to you!
i was diagnosed in 2007 will on a job but the employer was not able to accomodate me so i had to leave!!! i really have not had a job since then, i did have two factory jobs since then but i could not keep up with the speed they wanted, so they were the last ones i have had and now i have had to go to doing house & yard work for my room & board!!!!!!! but still filling out applications and nothing and now not even sure what i can do!!!!!!!!!!!!!
AJ, I was in grad school with Fibro and CFS, and a couple of things that helped me were: being allowed extra time to get assignments done (if I needed it – I did try to avoid this as much as possible, bc I didn’t want stuff to pile up); having extra time and a separate, quiet room to take tests; taking fewer classes (I know what you mean about wanting to finish – I was 36 when I finally got done, but I felt like that was better than pushing it and winding up not finishing); being allowed to get up and leave the classroom if I just really needed a break (I would lie down in a break room for a little while – hated doing this bc I loved my classes and didn’t want to miss them, but it was better than missing them all together)
…..I might have had a few other possible accommodations, but I think those were the main ones.
I know that it is a pain to get the paperwork filled out in order to get these accommodations, and I hated to have to ask bc I don’t like to appear to be getting special treatment, but it was definitely worth it, and having it documented now (even if you don’t think that for sure you will need all the possible accommodations) is better than needing them and then not being able to get them
(I ran into this problem early on in my illness – almost blew a class bc the teacher did not want to accommodate my needs for extra time and a quiet room for a test – when I got things documented and took another similar test – not a retake – I aced it)
….also if you get the paperwork filled out and talk to someone, they may be able to give you some more ideas that you haven’t even thought of
and, if getting a disabled parking permit would help you, I would seriously say to go for it – I know that it is uncomfortable having people give you looks and stuff esp if you do not look like anything is wrong, but it is still worth it to avoid crashing and hurting more
I had a bumper sticker made that says, “Not all Disabilities are Visible” to try to help deal with this issue (You can do that online very inexpensively)
I worked as a school counselor in 4 elementary schools. Even with my diagnosis of FM and depression, no accommodations were made when requested ; chair, computer changes/additions, lighting, etc. I “retired” after being subjected to what I would term “work place bullying”. I have since filed for disability but been denied, even at the reconsideration phase. I won’t give up. Thank you for this new information!
when i was diagnose with FM & Psoriasis, the OT from my company took of on my normal dutie and ask HR to accommodate me.It took them 3yrs to do that after so many battles and frustrating,i nearly resign. this year 09′ i study but i was not coping as i was under stress due to work relation.
i’m really happy to listen to others stories. When i wake up in the morning my shoulders are very painfull i can’t even hold a cup the pains are too much for me to handle now.
everyday i’m in pain that sometimes can’t even think properly or pain killers help.I;m on methotraxate,deprozan,amytriplen,tar formulars & pain tables& Voltaren. i also supplement everyday with spurelina or procydine.
I take ultram and it really helps with my pain (my pain started from a accident of a pelvic fracture and then one years later i had a car accident , and 2 surgeries and three years later i have CFS and alot of nerve pain due to three pinched nerves) but the ultram i take is called Ultam XR which is the extended relief so u dont get a tolerance as fast and only have to take one pill a day Iam on the 200mg and they go up to 300 mg (sometimes in the winter months I take a extra Ultram 50 mg when the pain is worse due to cold weather and ect) I also take a vitamin D probotic and what really increased my energy was metabolic B12 injections and fish oil. When i cant sleep i take zanix but not daily just when I exhausted and pushed myself too much so I get a good nights sleep. Hope this helps
It’s time to renew the handicap placard that I’ve had for 10 years. My new physician does not want to renew it. She wants me to “walk more, not less.” I am at a loss regarding how to deal with this attitude. While I certainly don’t require this accommodation every day, the placard has allowed me to attend events that are especially tiring … ones that I would never attempt without the ability to park closer to the entrance.
Since I’m requesting a “renewal” of an existing placard, I’m at a loss about why she feels I am not eligible for this service.
I’m wondering about your thoughts in dealing with this matter. Any helpful arguments out there?
Three months into my new job, I had a major health crisis, which seemed like a flu that wouldn’t go away. I went on disability and was diagnosed with CFS. My employer (a giant corporation) requested an IME, which confirmed my doctor’s diagnose. My employer gave me a reduced schedule for 12 weeks (I only have to work for 32 hours each week), but they keep refusing the accommodations I am asking – a reclining chair in one of the 10 meeting rooms we have. My exhaustion is so awful sometimes that I can’t even think straight. I know that taking 2 breaks a day for 30 minutes where I can rest would help immensely. I asked the HR rep who told me a bunch of BS. He said they could not accommodate my request since they had no extra room and that they are already doing what they are required by law. My 32 h/w “accommodation” will end soon and I feel desperate. I know I can’t deal with a 40 h/w without rest breaks. I even thought about buying a mini bus so I could use it twice a day to rest, but I am afraid of getting in trouble. I recently spoke to a Labor Attorney who told me they can fire me if they want, since I have worked there for less than a year. I am so distressed over this…I am welcoming any suggestions any of you may have. I can’t afford loosing my job.