CIDP and Work Issues

    • Anonymous
      August 3, 2006 at 5:52 pm

      My current job situation is getting tenuous – you would think working for a Town government they would be somewhat aware of ADA issues but three of the Town Council members are convinced I’m not sick and are making things uncomfortable for me – yelling (yes, yelling) at me about my productivity etc. My boss is quitting because they are also yelling at him about his lack of productivity which I feel is somewhat due to me being out having surgery or just sick with this disease. I’m feeling guilty enough about that but I’m really nervous about what will happen to me when he quits. He is the only one of my superiors who has supported me through this and I feel like he is being forced out because I haven’t been able to be there for him. I know I’m next on the list and I don’t know how to go to a prospective employer and say “hey I have this rare neurological disease and I’m not sure if I’ll be able to work every day of the week and I can’t walk much or use any muscle repeatedly or it spasms or twitches uncontrollably…” who in their right mind would hire me? This is such a small Town that suing them would be devastating to my personal life – I currently have to live here and I swear I can’t go to the grocery store without seeing at least 10 people I know and those are the people who elected the Council, some of whom are trying to run me out. I wish I were still working for the Federal Government, at least then I know they would work with me instead of putting up barriers. The Town Manager will not even let me work at home though he lets other people who have children do it when their children are sick. It’s hard enough to work when I can’t feel my fingers or legs and I can’t imagine looking for a new job – I’m hoping for the best, one day at a time. Well thanks for letting me vent even if nobody has had a similar experience at least it feels good to get it off my chest.

    • Anonymous
      August 4, 2006 at 11:08 am

      Oh, my gosh, Julie, I’m so sorry for your problems at work.:mad: Makes me mad that you’ve gotten such bad treatment.

      I currently work for a great, understanding boss but got my layout notice 2 weeks ago.

      I’m having the same issues thinking about a new employer — who’s going to put up with it! I feel like I’m unemployable. No one’s going to understand — I don’t look sick but my emg last week shows little nerve conduction and now I have carpal tunnel. I have to brace my hand against my keyboard to be able to control the mouse.

      You’ve not in this alone. Anyone with ideas to share?


    • Anonymous
      August 5, 2006 at 3:48 am

      Thank you for sharing Cathy – I hope you didn’t get laid off because of your illness, and I hope I don’t either. I don’t feel particularly singled out because of my illness, they are targeting at least a half dozen people they feel are underproductive. I’m just not used to being considered one of those people, I’ve always been the one who got twice as much done as anybody else. I still feel that even with the numbness I’m as productive as some of the lame ducks they are not targeting but they are used to seeing much more from me. At least if I end up in a new job they will know exactly what they are getting and if they take me then they must feel I’m worth hiring despite my illness. I wonder how many people with CIDP are able to stay employed…

    • Anonymous
      August 5, 2006 at 1:02 pm

      Julie don’t they have to help accomodate you because it’s a disability? I am sorry your in that situation, some people really are oblivious and uncaring at times.


    • Anonymous
      August 5, 2006 at 1:53 pm


      I hope you are able to resolve your difficulty… I have always wanted to return to teaching history and became certified in special ed. hoping that would be a way of doing it (doing special ed. part time to be able to teach history), but now, like you said…what school district would want to hire me when I cannot stand to teach and have difficulty gettng around a classroom to help students… My special ed. supervisor is going to work with me where I will have a smaller caseload this year and will be working with younger kids, 5th and 6th graders rather than high school kids… I hope it helps..

      I was approved for a disability (early) teacher’s retirement, but I am in a position where I have to teach another year full time before I can go to half a day… Our retirement is based on our last 3 highest salaries…

      I wish you the best of luck and wish I could offer advise… I know how important it is to have someone who understands… I guess I am lucky to be working in special education because they all KNOW about accomodations, etc…


    • Anonymous
      August 6, 2006 at 4:45 am

      I don’t know if it’s a matter of knowing whether they need to provide accomodation versus passive neglect. I began asking for two things back in February – can I work at home and can we establish a leave sharing program because 4 people had approached me about giving me a week of their annual leave that they would lose at the end of the year anyway. The end of the year was June and the HR person finallly put the paperwork together at the end of July and it passed – to late for me. Plus she put some provision in there that if you are still on probation (which I am because they promoted me last year) then you are not eligible. Is that on purpose? Or did she simply forget I’m still on probation? I don’t know. They also still won’t let me work at home – citing that they don’t have a policy in place, plus the work I do is administrative, I can’t file from home. It’s quite frustrating but I know I could fight back more than I do – I would prefer my work to be a nonconfrontational environment.

      Maybe I’m just too proud but I still think I get more done than some people who get paid more than me. My technical/computer skills make up for the repetetive motions I can’t do anymore – I learned how to make my database back itself up, I got PDAs for the field staff and put their work orders on them so they can just beam them to me at the end of the day instead of hand writing them and then having me retype them. Unfortunately though their level of expectation for me is based on my level of endurance, not my level of intelligence and while 90% of the employees tell me if I leave the place will fall apart, the other 10% make the decisions.

      It’s weird but I’ve learned that working in a small Town government is more like my time in Peace Corps than my time working for the Federal Government. ๐Ÿ™‚

    • Anonymous
      August 6, 2006 at 9:07 am


      I know you might not want to, but have you thought about making a State or Federal Senator aware of your circumstances?

      I work for State government and they are well aware of ADA. According to ADA your employer, whether private sector or government, must make “reasonable” modifications to accomodate your disability. All that should be required is a letter from your neurologist stating your condition and its limitations. Getting a higher level government individual “on the case” could help you and that government individual, ie. being able to add helping insure laws are carried out in government to their “things I’ve done” war-chest for re-elections.

      I have never lived in a small town so I can’t say I know where you are coming from where that is concerned, but the law states (federal law) that employers must make “reasonable” accomodations for handicap employees. You have the right to force the issue. As for the “filing” part of your job description, couldn’t they allow you to come in maybe once or twice a week to get that done? That seems like a “reasonable” modification to me.

      Finally, the right attourney would jump all over this one should you be willing to take it that far. Like I said, I can’t relate to the small town ramifications, but your rights are your rights under law.

    • Anonymous
      August 7, 2006 at 2:34 am

      Hi Eric,
      Thanks for the suggestions. I actually have thought about calling up some old political contacts which is so unlike me I know I’m p.o.’d. I’m still waiting for that letter from my doctor stating he thinks I have CIDP and he is waiting to make sure it’s not MS, which he is “positive” it isn’t. Hopefully that will come this week and I can get the ball rolling again. I’m trying to give them the opportunity to do the right thing before I go making a stink in my own back yard. Of course there is the definition of “reasonable” also. I may be wrong but from what I recall of my Federal days “unreasonable” could be that you simply can’t afford to make accomodations for this particular person. For example, the only handicapped bathroom is on the other side of the building from me through three heavy doors, all of which close automatically, not electric, they just slam shut on your way through. From my days on crutches it’s a long way with lots of obstacles and when I was on prednisone there were days I barely made it even with people jumping up to open the doors for me. I was kind of joking at first when I asked if we could put a port-a-potty on the deck outside my office, but some days I have to do a wobble-sprint to get there in time so it’s not really funny. I did seriously ask about converting the doors to handicapped doors and got the brush off “we’re investigating lots of changes” but I haven’t pursued it in the last few months. If I end up using a wheelchair though there is no question I can’t get through the doors by myself.

      This is a bit of a tangent but not really. I got into a discussion with a friend who left working for our Town and now works for the State. She was immediately put in charge of a lady who has MS and is in a wheelchair and found herself with a delima. This lady no longer has control of her bowels or bladder and when she has an accident at work it is up to her coworkers to clean her off and get her in a new Depends, even the men have had to take her to the bathroom and sponge her off. All of them are too embarrased to say ‘no’ and they are afraid she will sue them if they do. I’m waiting to see how my friend handles this situation but in light of that sort of accomodation it makes what I’m asking for seem like nothing!

    • Anonymous
      August 7, 2006 at 7:46 am


      Ah, I see you caught my quoted “reasonable”! That’s the kicker. However, it puts the monkey on the employer’s back because they have to provide paperwork to prove that an accommodation would not be “reasonable”. That’s another tack you could take, by the way: try to figure out a way to bury them in paperwork. In my experience, especially where change is concerned, government employees hate dealing with the mountain of paperwork required for some things. ADA makes it clear that proof has to be given showing that accommodations are “unreasonable”. Sometimes I have seen a simple memo copied to the right people (and blind copied to some important people) generate a firestorm of activity to avoid the paperwork. ๐Ÿ˜‰ That’s a low-down trick, but when folks are not doing the right thing up front I have no problem not following tact and decorum. ๐Ÿ˜€

      I completely understand trying to give them time to do the right thing. Political contacts can be a really great ace-in-the-hole too. I hope things work out for you without causing allot of hassles for you. I have noticed lately that my co-workers are basically writing me off not including me in any activities planned on days they know full well I’ll be in the office (every Tuesday). There is some jealousy there, I think. Also, there may be some resentment. I don’t know for sure, but I think some of them have an underlying doubt that CIDP can be as devastating as we here on the forums know all too well.

    • Anonymous
      August 7, 2006 at 3:41 pm

      Thanks for the laugh Eric, just the visual created when I thought of burying them in the dreaded paperwork was enough to make me giggle. I did receive some good news today, the leave transfer program has passed and six people came to me today to say they will give me a week of leave when I’m out of short term disability. Others have said they will give whatever it takes to keep me working there because they don’t want me to leave. I almost cried it made me feel so good. Whatever the top thinks, obviously the bottom up wants me there and still feels I’m productive. YEA!

    • Anonymous
      August 8, 2006 at 6:46 pm


      here’s another one for you … you know that look someone gets after they’ve read the memo documenting your situation and see to whom it has been copied … then … wait for it … the smile is sagging … the twitching eyebrow … YES … they realize everyone else who got a copy of this memo is higher up the ladder than they are ๐Ÿ˜€


    • Anonymous
      August 9, 2006 at 11:08 am

      Hey thanks Eric – I see you and I have a similar sense of humor! That memo should go out sometime in the next week so I’ll let you know how people respond. To be honest they are much more concerned about political issues right now to even care about me which may work in my favor. The last thing they need right now is another law suit… yesterday I asked for a new chair, one with a high back because my neck muscles are weak and I got “whatever you need” in writing so I’m going shopping online after lunch. I think I’ll go a step further and get a new mouse too – one with a track ball so I don’t have to move my arm so much. I’m so pathetic I felt guilty about asking for a new chair until I walked into the Finance department today and saw that ALL of them have new chairs – all with high backs and adjustable arms. I don’t feel guilty anymore but it’s clear I have to ask for what I need as they sure aren’t going to think of me when they order new stuff. Sigh. I hate being the squeaky wheel but obviously that works so I’ll have to change my attitude.

      Thanks again Eric, it’s wonderful to know that there are people out there as frustrated as I am but still retaining their sense of humor.

      I had a funny morning – they had an “all hands on deck” to do a big mailing about some drastic move the Town Council made last night. They asked me to help and for awhile I was OK, slower than others but still getting things done. Then when my nerves started giving out suddenly envelopes started flying in all directions spilling their contents all over the table. I thought it was funny, one person thought I was just pissed and doing it on purpose, the rest were shocked. That’s when I really started laughing, there is nothing like a personal demonstration to remind people that even if you look OK you aren’t. Hee Hee.