Sharing My MS Diagnosis at Work
If I could have had a choice, I would have hidden my MS diagnosis from my coworkers and my students for as long as possible. In fact, I would have been perfectly fine with never having to tell them that I had MS. However, based on how my first signs of MS presented, that was not the case. I had to face what it meant to cope with a “visible” part of this “invisible” disease early in my MS journey.
My first “outward” symptom of MS was difficulty walking. Even though I did not yet have a diagnosis, my walking difficulties became progressively worse and noticeable. I tried to find ways to hide my walking difficulties from my students and my coworkers. I would lean against the podium when I lectured, to give the “cool” professor look. I would purposely stop on the other side of the building to rest so that I could have a normal gait when I passed by the students in the morning. When my coworkers and I would walk to the cafeteria for lunch, I began to tell them that I would meet them there, so that they would not see how slow I was walking.
My diagnosis came shortly after an episode where I literally stopped walking. Shortly after, my MS diagnosis was confirmed. I took a short period of time off work as I started my initial treatment. I improved, but still did not feel confident with walking. When it came time for me to return to work, I decided that I needed help with walking in addition to physical therapy. Therefore, after some consideration, I decided to purchase a cane.
On the day that I returned to work, I found myself walking into the building with my head high. I visualized myself walking along a red carpet, and the eyes that were staring at me were not because I had a cane, but because I was fabulous! Returning to work with a cane turned into an empowering experience for me.
When I look back on my experience of sharing with my coworkers about my diagnosis, there were a few things that occurred that made the experience more manageable.
The first thing was my mindset. I worried about how my coworkers would view me now that I had a cane. Would they view me as helpless? Would they view me of lesser value in the workplace? I decided that while I cannot control how others think, I can control how I think. I chose to look at the cane as an aide to help me live my life with fewer limitations. I viewed the cane as an extension of me, which is why I found a cane that was colorful and bright to match my personality.
I did not allow myself to view my use of a cane as a negative. Rather the cane was a tool that allowed me to live my life.
Second, I allowed myself to have fun with the situation. How many of us imagine walking down a red carpet as we enter work? On a Monday of all days?
Third, I tried to put myself in my coworkers’ shoes. I think it is normal to be concerned when you see someone one way one day and the next time you see them, they are walking with a cane. Questions from coworkers and looks of concern from students came quickly. I understood that they would have questions. As a pharmacist, I decided to put myself in the shoes of one of my patients. I prepared myself for answering questions by thinking about how I would explain MS to a patient who may have just been diagnosed with MS. I thought about how I would take complicated medical information and in a way that was easily understood and relatable, while not diminishing the severity of the condition. I decided that this was the best approach for my coworkers.
One example that I remember well was when I was asked to explain “what it felt like” when I would have an MS flare. I remember explaining my tingling sensations by saying “imagine you are watching tv and the tv loses reception. All you see on your tv is black and white fuzzy static. If you could imagine that vision having a feeling, then that is what my legs and feet feel like when they are tingling due to MS.” While my coworkers were not patients in this situation, this technique worked. It made MS more “approachable” which in turn, made me approachable, I believe. As I answered their questions, I discovered that my coworkers were incredibly supportive. There were a few coworkers who chose not to ask questions because they wanted to respect my privacy. I appreciated that.
My coworkers now know about my MS diagnosis, and I am not ashamed. They treat me the same as they did before the MS diagnosis, and I am grateful for that. While I still believe that some parts of my MS journey are private and many aspects of this condition are “invisible,” this experience has taught me that it is OK to talk about my MS journey when my MS decides to become “visible.”