Job Hunting with MS

When I was diagnosed with MS and Rheumatoid Arthritis about 20 years ago, I was both relieved and annoyed. Relieved because I thought I going crazy--and annoyed because I didn't want to slow down. I had been married just a few years and worked 45 - 50 hours a week at a demanding job I really enjoyed. Now that we had named my demons, I was ready to start treatment and resume life as usual.

But, with MS, there is no "life as usual." I was in a role at my company that made me very visible to employees. I handled communications, special events, fundraising and public relations. When I temporarily lost my sight, word spread. When I temporarily lost the use of my legs, everyone heard I had left the building in a wheelchair. I had to spend a lot of time and energy reassuring my boss and colleagues that I should continue working.

As pressures at work increased, so did my flare ups. Since the majority of my work involved writing and editing, I could work just as well from home during a relapse, but it wasn't "company policy." I focused on building my project and time management skills. I cut out all social activities so I could get enough sleep to make it through the day. That was when I became aware that my activities were being monitored and evaluated. Management saw illness as weakness and my name was removed from a list of those eligible for promotion. The front-line staff sent me emails telling me I was a hero because I "stood up to HR" simply by continuing to work. They feared asking HR for reasonable accommodations to their own disabling conditions--including MS--but I thought they were being paranoid. Then one day the HR director informed me that cutting my doctor's request that my hours be cut to 40 - 45 a week was not a reasonable accommodation, nor was working from home when my legs wouldn't work. "If we let you work from home, what kind of message would that send to everyone?" she asked. Oh, I don't know--maybe that technology makes it possible for those with disabilities to still work effectively?

I was willing to have my salary reduced to match the reduction in hours but they wouldn't consider it. I suggested working six days instead of five, with fewer hours in a day, but that was rejected as well. When a portion of the company was sold and I was included in the subsequent layoff, I was grateful because now I had time to determine my next steps. I began my own freelance communications company so I could control my hours and work environment. Still, freelancing doesn't provide benefits, so I am cautiously looking for regular full-time work. And I am nervous.

We all try to put on a good "face" for interviews; mine requires deception. I fold up my cane before the interviewer comes out to greet me. I dress in cool clothing so I don't overheat. I take notes so I can remember what we had discussed 5 minutes before. When recruiters ask me why I'm aiming "low" for my experience and pay scale, I reply that my priorities have changed. I have fought brain fog, fatigue, muscle spasms and vertigo to get where I am today. I do not want to fight discrimination and misconceptions, too, just to get through the door.