This Is Me, and This Is How I Live with My MS

Have you ever read something and thought, “This is me, this is my MS”? It happened to me today as I read a post by Rachel Horne on the BartsMS blog.

Horne writes about how some of us adapt to our MS diagnosis better, or at least differently, than others. She says that “some people with MS manage to adapt and even thrive despite all the disease takes from them. Somehow they find new meaning in their life, forge new identities and preserve a sense of self.”

That’s me. I don’t think I’ve found new meaning in my life or forged a new identity over the 39 years that I’ve lived with MS, but I have definitely preserved a sense of self.

How did I do this?

Horne says this preservation of self comes from accepting and adapting. She shares sociologist Kathy Charmaz‘s definition of adapting: “altering life and self to accommodate physical losses and reunify body and self accordingly.”

Charmaz says that adapting happens in three stages, which Horne summarizes: “First, by experiencing and defining impairment; then by making bodily assessments and identifying trade-offs and finally – by relinquishing control over the illness and flowing with the experience of it.” The progressive nature of MS means that adapting is an ongoing process.

That’s me. I live with my MS as best I can. I don’t “battle” it. I live with it. I go with the flow. This didn’t happen immediately or all at once; as my MS evolved, so did I. I’ve never mourned what I’ve lost, as some people with MS seem to do. I’ve simply adapted slowly as my mobility has slowed.

First, I started using a cane, then a functional electronic simulator to help counter my foot drop, then a scooter and two canes. My MS progressed so gradually that none of the life modifications my disease demanded seemed to be very drastic. I have moments of frustration — more of them as I grow older — but I’ve been able to roll with those punches.

Support was a key

I’m very fortunate. I’ve had great family support, a couple of excellent neurologists, and an employer who was willing to work with me so that I could continue my challenging, enjoyable career with them for a little over 32 years.

On the other hand, I never looked for support from an organized MS group. I was recently asked why, and looking at myself honestly, I found that the answer is that a couple of times that I attended a local group meeting, I felt more disabled than I wanted to feel. Maybe that’s foolish, or even selfish somehow, but it’s one of the ways I deal with my disease.

I realize that there are people who are much more disabled than I am and that there are people who have had a lot less support. If you’re one of them, you may feel very differently about your MS experience. For that, I’m sorry. I hope that, as Horne writes in her post, you will be able to “find new meaning in (your) life, forge new identities and preserve a sense of self.” I truly believe that, rather than hide from the storm, it’s much better to at least try to learn to dance in the rain.

You’re invited to visit my personal blog at www.themswire.com.

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