I was wondering if anyone here was able to work full-time, or even part-time, and while managing their neuro-immune disease?

I’m about to graduate and attempt to work full time. I’d just like to hear some other experiences to make sure I’m preparing properly.

Also, if you receive accommodations how did you go about fielding them with your employer (i.e. as needed or all up front)? Does it seem to cause any issues?

Thanks

Summer,

I currently work full time as an attorney. It is mostly a desk job, which is the only thing that makes it possible. If it was a job that involved any kind of manual labor or even standing for long periods of time, I would not be able to do it. Also, I’ve been sick for less than a year. You read about a lot of PWC’s who were able to work for a while at first, before having to quit. So it may be that I’m just in an early stage of CFS. I just have to wait and see how the disease progresses.

As far as accommodations, I’ve had to make three adjustments. Normally, lawyering is a job that requires more than your typical 9-to-5 schedule. Most lawyers work until at least 6:30 or 7 on a regular night. The first thing I did was to explain to the powers-that–be at my firm that I need to leave by about 5pm every day. I can’t be killing myself while trying to heal at the same time. They understood and we agreed that I would skip getting a raise this year, but my pay would not be reduced. That seemed fair to me.

The second thing is I explained to them the nature of CFS and “crashes.” I provided a number of articles about crashes for them to read. So I told them that they should expect that I will have to miss work every once in a while when things get bad. (So far, that’s only been about 3-4 days a month). When possible, I try to work a little bit from home on those days. All they really care about is that I make my billable hours requirement, so it has worked out so far.

The third thing is that I told them I will likely not be able to do trials any longer. This could be a major problem. Two years ago, I was promoted to “partner” specifically because I was to be the guy who handled all the trials. But trials involve 14 hour work days, ENORMOUS stress, and usually travelling to another part of the state or country…wherever the trial is venued. Obviously, none of that is possible in my current condition.

Typically, one of our cases goes to trial about once a year. Right now, it’s been over a year since our last trial, so I’m overdue. But I made it clear that I cannot be “the trial guy” any more, unless my health drastically improves. For now, we agreed that we would “cross that bridge when we come to it.” If the next trial comes and I cannot handle it, I may have to volunteer for a pay cut or something. I really don’t know how that’s going to work out…

Luckily brain fog is not one of my symptoms. If it ever becomes one of my symptoms, I may be screwed. But for now, I figure that if I was at home all day, I’d be doing the same thing I do at work now, which is sit in front of a computer screen all day. So I figure I might as well keep getting paid for it while I still can…

I realize, a lot of this isn’t directly applicable to you in your field, so I guess my advice would be: if possible establish your worth first, then negotiate knowing your value to the company, but be willing to make reasonable concessions. By the way, I’m not sure if you’re legally required to disclose your illness before being hired. You might want to look into that… If I get a chance later, I’ll look into it too.

You probably know this already, but the Americans with Disabilities Act (ADA) allows existing employees with disabilities to make a request for reasonable accommodations to their employer, and the employer MUST comply as long as it is “reasonable.” [In fact, in 2009, I got a client $540,000 after she made an ADA request to her employer, for early-onset dementia, and they fired her instead!]

I have NOT looked into whether CFS qualifies as a disability under the Act. But, if you decided to make a request, I can help you draft one that complies with the statute.

Good luck. I’m pulling for you,

Patrick

Follow up:

This is the best primer I was able to find on ADA law as applicable to pre-hiring disclosures, and the interview process.

http://www.eeoc.gov/facts/jobapplicant.html#potential

I used to work before my illness got as bad as it is now (as in after I got sick, before I got super sick). I was a Nanny to a little girl, she was 2 months old when I started. It ended really badly with the mother firing me over a small slip up *sigh*. Anyways, I asked for accommodations as I needed them. But I was also lucky that the mother’s job was CEO of a small company that helped disabled people regain their independence and so she was familiar with the ADA and had actually fought to get it passed. I really miss that little girl…

I worked full time for a few months, after a long steady ascent from working about 10-15 hours. Eventually, I had a big relapse and now I’m trying to get back to work. I think it really helped that I had a very open, honest relationship with my employer. He valued me for being there and therefore didn’t push me to just put in hours, but rather to make sure I was feeling my best. This is a lot harder when you’re just starting out somewhere, but I think it can be done. The other thing that helped me was for a long time I insisted on being paid by the hour, so that if I failed to put in long hours one week, nobody resented me for not pulling my weight.

Good luck!

I have been battling FMS/ME/CFS for 12 years now. The first 8 years, I had major work issues, multiple stints of unemployement and major stress. I have been lucky as I have now been in the same job, fulltime, for 4 years. It is the best job I have ever had. I still struggle every day, but to echo what has already been said, full on blunt honesty, full disclosure, and constant communication with your boss and your HR staff is critical. Educating them, as mentioned, helped me dramatically. I also send my boss a weekly update email with how I am doing, what I am dealing with that week, and more. I have a very compassionate and understanding boss. She is awesome. They know that I will always do the best I can, but sometimes the best I can is not very much.

Good luck to you in your search for employment. I’ll defer to the lawyers advice as far as what to disclose in the interview process. I chose not to say much, except that I am a disabled veteran, and that covered me as for disclosure without going into a 2 hour lecture on what we all have to deal with every second of every day. I educated them over time.

@Patrick : CFS is considered a disability and I also have a diagnosis of Fibromyalgia which is also protected by the ADA. And no, you are not required to disclose a disability before being hired; I was actually told not to so that if after they find out and fire me I can sue them.

My biggest issue in terms of navigating my accommodations is trying to express the sometimes necessary days where I need to stay at home. I’m just not sure how to get a company to be OK with that. I suppose I’ll just see how to navigate that when it comes. My plan was to ask for things as needed instead of overwhelming them all at once. Most of my stuff is simple: I need somewhere to sit, etc.

I’ve had this for almost a decade now and have managed to finish up my undergad, but I had accommodations allowing for missed days. I’ll just have to see how well my functionality/stability translates to work. Thanks for you story!

@singedrose : I’m sorry you miss the little girl, but I think it’s awesome you worked for someone trying to help those with disabilities. It’s nice to know such people exist. Thanks for sharing.

@tomriddle : Your employer sounds like he was great. I hope you can get back on your feet again, in some form. I’ll just have to wait and see what kind of environment I end up in. Thanks!

@kellyckendall : Congrats on having such a great work environment and being able to keep it up. I think the weekly updates are a great idea. I just hope I can find an understanding boss/company. I’m great at what I do and extremely productive/efficient, but when I hit my limit my work isn’t worth the price I pay, so I hope I can find a way to navigate that issue the way I have with my academic research work. Like I told Patrick, I was advised to not reveal disability before being hired, because I’m legally never required to reveal unless I choose to do so. Educating someone over time is definitely the way to do it though; it’s what I’ve done with my current internship. Thanks!

I was able to successfully work part-time when I was sick without accommodations. It wasn’t the best idea, but that was when I knew little about my illness and thought “pushing through” was the way to go. I made sure not to waste a minute while I was at work so I would get as much done as any other worker, then I would collapse when I got home.

I also worked full-time at other times when I was sick. Once was during a summer, but I had to request to be moved to part-time because it was too much (the job required being on my feet all day). After I graduated college, I began working full-time again, but at a desk job. I was hired as a temp and worked as a temp for a month or so without even mentioning my illness. This allowed me to prove I was a hard worker before I interviewed for a permanent job working for the company. During my interview I mentioned my illness as I was confident that I proved that it would not interfere with my ability to do my job.

I was able to continue to work without full-time without accommodation for a year before my condition started to deteriorate so rapidly that I could no longer push through. With doctor’s notes, I was given accommodations, such as not having to do certain tasks that aggravated my symptoms. My job was also understanding about my increasingly more frequent sick days. Eventually, I just couldn’t keep up the push-crash cycle and after finally seeing a knowledgeable doctor, was told I needed to take time off of work. Once I stopped working and constantly running on adrenaline I crashed hard and realized I was much sicker than I thought. I have still not recovered from pushing myself so hard for so long.

You can never be too careful and really need to recognize what is or isn’t within your limits. Try not to push yourself too hard.

As for advice on how to manage if you can, anything you can do to be more efficient can help you keep up (things like doing like tasks together or organizing your workspace well). Showing you are a hard worker will help your employer be more willing to accommodate you later on if you need it.

@sleepyb : Thanks for sharing. I’m sorry you got hit so hard by the illness.

I’m definitely all about not pushing too hard. I’ve learned a lot from my experience with school and expect work to be easier in some respects. I feel well prepared in terms of what to expect with my work since I’ve been doing it already in my research. It shouldn’t be that taxing on me. My main worry is navigating my accommodations with my employer, because while I’m really good at pacing and managing my symptoms; there are still crashes I have no control over (e.g. weather). I just hope I get an understanding employer who can see my value based on my work and accept that I’m not the perfect employee in all respects.