Many people on this site have expressed the challenges of MS and employment. I would like to add another experience that was not so positive.
My initial strategy for dealing with MS was DENIAL. I travelled that famous river for 20 years as a way to survive a long custody battle, earn a decent living as a single mother and to prove my worth in my career. It worked for a while. It got me through a second marriage and the devastation of losing my health care plan and my job.
I lost my health care plan because of how the high cost of the betaseron affected the increase in company premiums. That was a real slap in the face. I thought that being discreet about my MS would be respected by the health care plan that my employer offered. However, when the president of the company was told that the health care premiums would increase substantially because of the big medical expenses of one of his employees, he asked around and found out through one of my staff that she thought it might be me because I had innocently mentioned that I had MS.
I thought that I could finally start “coming out of the closet”. I was so proud of myself that I was doing so well in my long business and academic career in spite of my MS. I finally thought that I could start trusting people to accept my MS. At that time the MS was pretty invisible and I was optimistic about my ability to continue working even though I struggled privately with the MS.
I was doing well at work and there was no question about my ability to keep up with the demands of my job. The president of the company told me that because of my excessive medical expenses that now everyone would have to bear the financial brunt of the increased premiums to cover my expensive medical needs. He was trying to make me feel guilty that others would be resentful of me because of the increase in their premiums. I was given the option to stay on the plan as long as I paid the overall increase in premiums from my salary!
Eventually I reported this incident to the government employment and labour standards branch in Alberta. I inquired about my rights and the government department wanted me to pursue this but warned me that I would probably be suspended from my job while this was investigated. I was devastated and couldn’t risk losing my job until I was ready to leave. So, I told the president of the company that I worked for that I was investigating my employee rights with the employment and labour standards branch. I was hoping that he would back down. However, he found another tactic to get me out. He made demands on my time and work load that were unreasonable, he tried to find fault in any project that I was leading and he restructured the company so that I was demoted and could not get a salary increase that he had promised in writing before he found out about my health issue.
I was forced out of the job that I loved because the pressure to leave was so pervasive that I was feeling the effects on my health. What an irony. The job that I was so proud of handling in spite of my MS was the very thing that caused my MS to get worse. The job that I had been hired for was to start a private vocational school and develop it through all the licensing with government, marketing and growing the business. It was demanding and took up all of my energy but I was successful and it is flourishing today as a result of my work.
Eventually I did leave to start my own private school where I was accountable to no one but myself and my team. I didn’t have to justify my work schedule or my choice of projects to anyone but myself. I found a government health care plan that cost me a little more that the former company plan but it still saved me the exorbitant $2,000 per month cost of my MS betaseron drugs.
I earn about the same salary as I earned before and have been able to slow down and reduce my stress level by being self employed. I know that this not possible for everyone with MS but this is my experience. I hope that some MS sufferers will be able to relate to my experience and perhaps benefit from by hearing about my struggle with employment and employee rights as an MS suffer.