Fifteen years ago, I was on SSDI for two years and desperate to go back to work.  Keeping a job and managing my health has been a huge challenge for me since the MS disagnosis 30 years ago … which is why I devoted a chapter to this in Women, Work and Autoimmune Disease: Keep Working, Girlfriend! (I love the new title, don’t you?)

I knew I couldn’t go back to the career I’d built for 20 years in multi media – both because it was too physically taxing and I didn’t love it enough to spend what little energy I had in this direction. 

So, while still unemployed, I became trained as a mediator.  I found paid work job sharing as mediation cooridnator in a tough inner city high school.  I knew ‘d lose my benefits when I went back to work (even with the low part time salary) but it was worth it to me to take the gamble that I’d be able to do this for the long run.  I loved that work more than anything I’d ever done – before or since.

But, it only lasted one year.  High school days start early (the worst time of day for me then, when I was so sick with ulcerative colities) and my employer wanted one full time worker.  Another opportunity lost to illness.

In this chapter, I’ve shared what I’ve learned from my own experiences so you can keep working and avoid going on poverty level beneftis, if at all possible. 

Here are some suggestions:

• Develop your internal balance –developing the capacity to ride the ups/downs and being able to listen to your body and respond to what it needs.
• Remaining stronger than the fear – using the denial microchips to your advantage while not letting denial allow you to ignore your health.
• Identity, productivity and delivery -  keeping your identity strong even as your productivity declines and you can’t meet all your goals.
• Managing your work and your health – when I said this to a client recently, he laughed and said, that’s a good joke.  But it doesn’t have to be and that’s your challenge.
• Trying something new – just as I did, moving from one career to another and then another.  You can do it but it takes motivation and strategic thinking.   I developed  set of questions you can use to evalute if a job is the right fit for you.

I’ve written before about an advocacy group that is trying to change the social security beneftis legisltation and they’ve recently made some headway so that people with chronic illnesses like MS, which wax and wane, can go on and off benefits to meet their needs.    Read about the legislatative proposal.

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