Last updated: June 2017
I work at the (world-famous!) HIV clinic at San Francisco General Hospital and in 2005 -while working in Kwa-Zulu Natal, South Africa (teaching doctors and nurses how to use the HIV medications we had been successfully using in the US since 1996)- I started having symptoms which later, back home, led to a diagnosis of MS.
I kept it a secret for 6 years (why? Good question! I will discuss that in a separate post). Then I had a sudden onset exacerbation while working in our clinic treatment room in 2011. I forgot what I was doing (starting an IV and drawing blood from a very sick patient) when one of the medical assistants told me I had a call from the Emergency Department. I got up, mid-procedure, and answered the phone. I do not remember what happened next, but I was later told that I did not make any sense while talking to the ED physician. When I finished the call and stood up I realized that I had lost control of my bladder and had wet my pants. The clinic staff took great care of me (and of the patient I had been working with), but clearly it was time to come clean about my diagnosis.
At the next monthly all-staff meeting I presented a 7-minute briefing about MS and how it affects me and how it might affect patients and colleagues who work with me. It was very well received, and my colleagues have been incredibly gracious in helping me manage my work: instead of telling me what they need they give me post-its (so I can organize/prioritize tasks visually) and instead of assuming I can/cannot do something, they always ask if I am able to do something that particular day (because they understand that MS is unpredictable: my hand-eye coordination may be fine one day, but crappy the next day. I can get an IV in a patient who is a "difficult stick" one day, but be unable to do even a simple one the next day).
It has been a learning experience for all of us, and I continue to be deeply moved and grateful for my incredible colleagues and patients. I have worked in HIV - which (still) carries a lot of stigma for 30+ years- but it wasn't until I had to face my own (much less stigmatizing) health challenges that I realized how hard it is to be open about your own problems, and how vitally important it is that we do.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: