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    Old 09-18-2015, 06:29 PM   #1
    Scelte
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    Working and disclosure - pain

    Hello all - since my last post I have been told by both neurosurgeon and PM specialist that I have mild to moderate myelopathy. Of course, I also have severe stenosis in my lumbar region; congenital and multiple herniations... so who knows where any of my symptoms come from. [imo - they are missing radiculopathy]

    Since my last post I have developed new symptoms (which are intermittent); some of my initial symptoms have either minimized or disappeared.

    I have given in and taken some medication; I was unaware of how much this was all impacting my emotional well being until the moment I realized I was actually feeling "hope" for my future. That was a moment I will never forget!

    After having the summer off, I am back to work and keeping medication to Aleve. I am better able to sleep (sheer exhaustion) and frequently forget about my condition during the day (always feel it; hard to explain). I chose not to mention my condition at work because I am afraid they will target me. Still, now that I am walking more and not allowed to wear sneakers I find myself tripping again much more frequently; heavy legs when I try to go for walks after work.

    Those of you who are working - have you found that you are more supported or encountering more negative consequences? I would be afraid to use my placard at work; even if I needed to. At what point did you feel it was time to say something and did it help with pain?

    Thanks!

     
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    Old 09-19-2015, 12:49 PM   #2
    MSNik
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    Re: Working and disclosure - pain

    My experience with disclosure has been really negative. I have MS and I also have a placard. I dont dare use it at my current job. And, funny enough I work in a hospital!

    I have had 2 jobs in the past since my diagnosis 12 years ago. The first job, I disclosed as soon as I got the dx. I didnt understand my dx at that time, was fearful that something would happen and wanted everyone to know "just in case". Everytime I sneezed, they thought I was having a MS thing. Everytime I got actually sick- like with the flu- the rumors were that I was in the hospital bed bound unable to walk...it was horrible. I was treated like a leper. Former colleagues stopped trusting me, stopped asking for my input at work, etc. I left the company.

    My next job, I only confided in HR. Thinking that HR would protect me I asked for accomodations like being able to park close to the building- being close to the bathroom with my office- being able to shut my door to my office if necessary for a few minutes ( I only ever did that once by the way- I was too afraid of what they would say if I needed to sit down and regroup behind closed doors). HR immediately told my supervisor, who told HER supervisor, who told one more person and within a week, everyone was talking about me and asking me terrible questions..."when would I be forced to retire?" "What will I do when I am in a wheelchair?" "Is my husband going to take care of me?" (I was the bread winner in my family).

    I left that job 8 years ago. Ive been at the same job now for 8 years. Ive never disclosed my condition. No one knows. Ive run into doctors in the hospital who know me and know about my MS, but I trust them to keep confidentiality. They wont tell my boss.....My life is easier now. I just do my thing, keep getting promotions and moving up in the world of administration.

    In my opinion and experience, unless you are looking for either sympathy or an excuse, dont tell anyone.
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