MULTIPLE SCLEROSIS AND THE CORONAVIRUS
Image by Jen Dolan
March is MS Awareness Month, but for those of us with multiple sclerosis, we just want people to be aware that we exist. I have MS, and I often feel forgotten. I have family members with MS who feel forgotten too.
It doesn’t just start when a diagnosis is given. Most other MS sufferers I know received a diagnosis when they were still highly functional. I envy those people because they had the opportunity to seek treatment early on. Some are still able to work. I wasn’t so lucky. I was misdiagnosed for over a decade, being sent to one rheumatologist after another. No two could agree on a diagnosis, yet every time I asked, “could this be MS?,” I was ignored.
Eventually I got to the point where I couldn’t work anymore. I was considered disabled by the Social Security Administration for two whole years before receiving my MS diagnosis. The only way I got that diagnosis was to become extremely proactive in my care, expressing that I would not go to see another rheumatologist, and insisting to see a neurologist.
There is so much loss someone with MS is likely to experience; loss of employment, loss of memory, loss of the ability to do so many things one might have enjoyed previously, a loss of self. But the one you’re never prepared for is the loss of friends.
I have come to realize that friendships are so often times contextual; lose the context, lose the friend. I had been active in so many community organizations, but over the years I became less able to contribute my time and energy. I made many friends through my involvement in these groups, or so I thought. Some people reach out occasionally, but for most of the people I once considered close, I may as well already be dead. It shouldn’t be this way.
People should be thoughtful. I was so hoping for a return to thoughtfulness in this country. I thought it might happen as a logical next step after so many people strived for mindfulness, but then those same people started to forget about being mindful.
That is, until this month, when Americans finally took notice that Covid-19 wasn’t going away anytime soon. Then people became very mindful about exercising precaution against themselves getting sick and spreading disease.
Ironically enough, I feel safer right now than I usually do. My immune system is compromised and I must always be cautious, so my behavior hasn’t changed. I am grateful that finally people are sneezing into their arm or a tissue, and not into the open air. I am ecstatic that people are washing their hands and adequately cleaning surfaces. This is how it should’ve always been.
This month, as people isolate themselves in the name of health and safety, they will get a better idea of what it is like for those of us who live with MS. As people slow down and spend more time at home, this is the perfect opportunity to reach out to those people in your life who lead a largely homebound existence due to chronic illness. What better time is there to become aware of these old friends and reach out with a phone call, email, or even a text message.
No one likes the feeling of being forgotten. Now is the perfect time to remember that.