Disclosing MS

In 1998 I was diagnosed with relapsing-remitting Multiple Sclerosis (RRMS). I went about six years with fairly mild symptoms including periodic numbness and tingling, a few bouts of optic neuritis in each eye, and MS fatigue. I was fairly convinced that this would be the course of my MS, but then things changed. In 2004 as I was about to graduate from college and start my first professional full-time job new symptoms started to emerge.

I began to have to urinate often and with urgency. There was no waiting or holding it. When I had to go, I had to go. This really came out of nowhere. I also began to notice a strange change in my gait. What years later was diagnosed as foot drop started as an uneasy feeling in the stability of my right ankle. On several occasions my ankle buckled in and I fell. The first time I was alone, the second time I was in front of several of my college mates. I blamed it on the pavement and high heeled shoes I was wearing.

Until this time, I had invisible MS. No one could tell anything was wrong by looking at me. I was a perfectly healthy person despite the MS. But slowly, my disease began to announce itself to the world. For years it had been mine to tell. I chose when I disclosed that I had MS to others. Now, it began to show and it became harder to keep it to myself.

I went on for about a year this way. Working full-time, pretending nothing was wrong. Avoiding situations where I had to walk long distances, dehydrating myself when I knew I’d be away from the bathroom for longer than one hour. Then my breaking point came because for the first time, MS affected my ability to do my job.

At the time part of my job required me to be out on residential construction sites. I often had to walk on uneven ground. One day while out at a job site my ankle buckled and I fell down. No one was around to see me. I got up, dusted the dirt off my pants, and went back to work. Over the next month I began to have anxiety about going to work. I made excuses for why I couldn’t go to job sites. I avoided it as much as I could. One day I called my best friend on my way to work crying hysterically about how much I hated it. At this point  something had to change.

I always think of this as the point in my life when I went public with having Multiple Sclerosis. My friends and family knew, I told other people when I felt safe, but I hid MS as much as I could from anyone outside my circle. It was on a need to know basis. I scheduled a meeting with the human resources director at my work. As I cried in her office, I told her that I had MS and was afraid I wouldn’t be able to do my job because of it. I don’t recommend the crying, but I do recommend disclosure of MS when it will get you the help you need. I cried because I truly felt terrified that having MS might take away something I worked so hard for; my career.

After my meeting, I felt the greatest relief. I felt like I didn’t have to hide or make excuses for myself. She gave me paperwork for the Family and Medical Leave Act (FMLA).  I had to get my doctor to fill it out and then I was placed on FMLA. I didn’t take time off work at the time, but my employer used it as a tool to protect me and my job. This documented my condition so that when I did use practically all my sick time at the doctor and when I finally did need to have some extended time off because of MS complications, my job was protected. Additionally they accommodated me by eliminating the job site work from my duties. I had plenty to do in the office. Eventually they moved the responsibility to another department’s employees whose entire days were spent out at the job sites already.

Disclosing that you have Multiple Sclerosis is a decision not to be taken lightly. The National MS Society has a wealth of information on disclosing your MS that can help you make decisions and inform you of your legal rights. I have never disclosed during a job interview, or to strangers that make stupid comments to me. But in this case it helped me keep my job, relieve anxiety, and feel more comfortable with disclosing MS in social situations. I wanted to share my story because it was a positive, although emotional, experience.

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