Forty years ago, when my body started refusing to do what I wanted, I became someone different than the person I had thought I was. For 10 years, I tried to power through increasing disability, working harder, pretending I hadn’t fundamentally changed.
But I was wrong. Accepting a new identity became crucial. I had to go from “David, who is rocking the world,” to “a guy who is doing pretty well with multiple sclerosis.” Strangely, the new David is much happier and arguably a better person than the old one.
This change was not a one-step process. The first thing I had to learn was not to take my body for granted. Not to focus full-time on getting things done or having the most fun. Our bodies are not machines; they need our care, attention, and love. I had to learn to appreciate my body even when it lost abilities I cherished.
I finally realized I could still do a lot of things I loved, be it gardening or having sex, if I adapted how I did them. For me, MS has been all about improvisation, using different muscles to take over from those that aren’t working well, getting help and adaptive equipment, taking occupational and physical therapy to learn new strategies and exercises.
Another big and powerful identity change has been accepting that I will die someday. I don’t have forever here, so I should focus on what’s important to me, not fritter away time with needless make-work or mindless entertainment. If I start to think I’m immortal, MS reminds me every day that life is temporary. As a result, moving at maybe 40% of my pre-MS speed, I think I’m accomplishing more good things than I did before.
A related lesson is not to be rigid. I don’t have to do things the same way all the time, and other people don’t either. It helps so much to be flexible, to be willing to try different things and different approaches to life. I find myself more willing to say “Yes” to new adventures, while still being realistic about what I can do with MS. Chronic illness doesn’t mean we stop growing.
There is so much to let go of when you get a chronic progressive illness such as MS. It’s normal to be sad sometimes when losing abilities or roles. The biggest challenge for me has been accepting new ways of living and making the best of them.
Don’t focus on what you have lost, but on what you can still do. There may be new, better things in your life to take the place of old ones. Even better, don’t focus on what you can or can’t do at all, but on who you are and how you connect with others. Eighty years from now, people won’t remember how clean you kept your house. But the effect you had on others, particularly on younger people, will live on.
When you look at your life as part of a community or family, you can see how important a positive attitude is. Have you noticed that people sometimes compliment you for “inspiring them” with how well you cope with MS? I used to hate that. A lot of disabled people do, because nobody’s trying to be inspiring. We’re just trying to live. But if our example helps other people cope with their own problems, isn’t that a valuable contribution? It has taken many years, but I now feel good when people compliment me like that. It’s better than having them say I’m a jerk.
More things to accept: that we will need care sometimes. I don’t think most people realize how much they are cared for already: by their parents, their spouses, health care providers, and many others. Resisting care just makes things harder for everyone.
People want to care for others. It makes them feel good about themselves. Of course, if they don’t know what to do or won’t listen to what we tell them, we have to learn how to assert ourselves. Bad care isn’t much better than no care. We need to be clear about what we want and don’t want, without being a complete bitch about it.
I have never been good at assertion, but MS has made me better at it. I realize it really does no good to be “nice,” if niceness means prioritizing others’ wants over my own needs. I think most people appreciate hearing what we really think, although they might not like it at first. We have to learn to do it well.
Because MS often means accepting a lot of hard things and giving up a lot of good things, it’s easy to get depressed. When it becomes hard to exercise or socialize or to spend time in nature, we have lost three of the best ways to stay positive.
Personally, I have flirted with depression many times, and not all because of MS. Having a chronic illness doesn’t protect you from other sad things in life; it might even make them more likely.
But depression isn’t the same as sadness. Depression means feeling bad about ourselves. We are worthless; nobody cares about us, nothing gives us pleasure anymore, we can’t see a reason to face another day. If you get like this, please seek help. I have done that a couple of times, and a therapist helped me work through it. So did getting out in the sunshine and learning to appreciate the good things life still provides.
So, if you’re like me, MS will change your identity. But if you’re lucky and if you work at it, you might like the new you better than the original.
To connect with other people living with multiple sclerosis, join our MS Facebook support group.
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