MS Employment Stats

[Jules A]

How long did you work after diagnosis? It made me sad to read:

"Recent research in the UK has shown that most people
with MS are in employment at the time of diagnosis, but
that employment loss starts shortly after diagnosis and
80% of people with MS are unemployed within ten years
of diagnosis."

This is an interesting resource:

http://www.who.int/mental_health/neu...las_MS_WEB.pdf

[MaxGrey]

Wow that is sad, given everything I've read the statistics are against me. I guess I'm just going to have to think positive and wait and see and not dwell on the probable outcome and grim future that could be.

[Lendi]

I quit work after about a year. I had been ill for many years though, it just took me awhile to be able to quit work because of finaces. I will say that I know I didn't do as well as I should have and could see the decline in my work which was one of the reasons I quit.

[isamadjul]

I took a leave from work in Oct. 2010 cuz I thought I was losing my mind! I was mentaly horrible at the time. I called a friend who is a RN about going to a Dr. to see about getting my back adjusted cuz I was having that numb feeling but it was worse. ( I never knew that I had a problem...I thought I had a "pinched" nerve or something) She was like YOU BETTER CALL THE DOCTOR NOW!!!

So long story short...I was DX in 3days. Tired to go back in Jan. but ended up on steriods after 3 days of work (this was 3days in a 2wk span of time ) Neuro said I should file just in case I don't improve to her liking...in March she said NO WORK.

In May I was approved for SS and recieved my first payment on the 3rd of this month. I'm 32 and have worked since I was 13yr...Hard pill to know I will not be able to work with the ppl I so loved at my last job!!! I HATE MS for many reasons but not being able to work is the hardest thing for me! Its the brunt of my MS HATE. But ....I will get over it (maybe)

[toot2818]

Worked long time

I was first DX in 1986. At time I was working at a community center: half time bookkeeping and other half running a kids program (40 hours +). Had been doing that job since out of high school, 1971.

In 1986 the Director of the center was leaving and he felt I should become full time bookkeeper, so I stopped working directly with kids. I had that job till 2009---many things at the center had changed, lots of stress!! New leadership, I was "let go". 2009 was not a good time to be looking for work. By now I was using a cane & four wheel walker. Thanks to the government stimulus program my unemployment was extended and my COBRA was covered 65%. I then applied for SSDI and was approved

So I would say YES you can work with MS. Needs to be the right job. One with little stress as my became!

toot

[Toomnyhats]

I was dx Oct 08 but began having sx in 1998.

I will work as long as my vision & cog fog allow.

[KoKo]

Jules

I worked for 5 years after diagnosis.

I was fortunate as my employer gave me light-duty accommodations for the last couple years.

Take care,
KoKo

[LindaT5761]

My dx came in 9/2010. My last day of work was 4/1/2011.

I think I may have had ms since 2006, but it was only in 2009 that i started having symptoms causing me to seek an answer. The 1st I heard that I might have ms was in 7/2010.

[BJG55]

Still working

I received my MS diagnosis 12 years ago. First attack around 19 years ago. I'm still working (I'm at lunch right now). It is getting harder to continue with this job without the MS (tight budgets). My MS just makes it worse. I used to want to retire early (55). Now, I wonder how long I will be able to continue to work, because we depend on my insurance. So much for retiring early. I turned 56 last month.

[Tawanda]

most people
with MS are in employment at the time of diagnosis, but
that employment loss starts shortly after diagnosis and
80% of people with MS are unemployed within ten years
of diagnosis."

This is so disheartening! Sadly, I do find myself, my 3 M.S. cousins, and my M.S. sister-in-law all included in this statistic so I have no doubt that it is true.

Our professions are such a huge part of our identities. We can go to school, get our advanced degrees, do our internships/externships and work for years and years towards perfecting our abilities and extending our incomes just to have it all blow up in our faces and have it all end in Social Security/Disability.

My self-esteem got crushed when I lost my ability to work and I doubt I will ever be able to rebuild it. Yes, I try to reframe my life as a 1950s super-mom, but I'm not that either!

Just one more thing, IMO what this disease does to a person's psyche probably scoots them out the employment door before the physical disablity does. I often think I cried, "Uncle" before I really, truly needed to, but perhaps I am just fooling myself into thinking I'm better off than I really am.

[Spydre]

Disability for other issues

I decided to pursue disability after I had my seizure after starting Avonex. But most of my disability is related to other issues - bipolar disorder (got fired in 2007 due to inability to concentrate during a nervous breakdown and ensuing lack of prodocuction), and intractible back pain due to fibromyalgia, which in the past three years I've in physical therapy for over 10 months. The only part MS played in my disability was loss in the speed of typing (and typing becoming very uncomfortable) because of damage to my hand - it's hard to be legal secretary when you can't type very well!

Essentially, once I got approved for disability (two years after my date of disability) it was dated to 2 weeks after I got diagnosed with MS.

[Jules A]

Just one more thing, IMO what this disease does to a person's psyche probably scoots them out the employment door before the physical disablity does.

Thank you everyone that responded!

I agree about the damage to our psyche and for years being bedridden was my worst imaginable fate however after researching and actually seeing different examples of MS the chances that I will sucumb to cognitive issues now freaks me out also.

I'm really trying to get myself in the frame of mind to be able to gracefully accept my fate when the time comes but have to warn you it probably won't be too graceful.

[Grade1]

One study I came across once mentioned that the average age of retirement for ms patients was 38 years.

But I have to admit that this bit of information is highly unreliable, because the study was about something else and this was only mentioned somewhere. And I don't remember anything else about the study anyway.

The point is, however, that the combination of ms and work might be sadder than we might like to think.

Personally, I was diagnosed four years ago. I was 32. I tried to work on-off for two years. For two years now, I have been on sickness leave / temporary pension. But there are other factors not just ms, so we couldn't generalize from that, either.

[Grade1]

Some other people I know with ms:

- a woman 32 yrs, temporary pension, studied/worked +-10 years after dx
- a woman 24 yrs, pension (permanent), worked 8 yrs after dx
- a man 45 yrs, working executive, dx 7 yŕs ago
- a woman 33 yrs, bedridden for years, obviously doesn't work, rapid decline after dx 10 years ago
- a man 60 yrs, pension last year, dx 2 yrs ago

So, it's pretty individual.

[Grade1]

Sorry, a correction:
- a woman 34 yrs (not 24)