Living Without a Cure

You often hear about cancer survivors; those who have beat cancer. But there is no beating a chronic illness. We live with multiple sclerosis; it does not go away and it can’t be cured. As Congressman Morris Udall said about Parkinson's disease, "I won't die from it, but I will die with it."

How do we live knowing there isn’t a cure? We live day by day. MS requires maintenance. We have to be regimented to make sure we get adequate rest, avoid triggers, take medications on time, and do what we can to avoid exacerbations. It is also important for us to just feel “normal” and go out and stay up late, even if we may pay for it later.

Knowing there isn’t cure doesn’t mean we live without hope. We do, however, have to combine a hopeful outlook with a realistic outlook.

So-called fixes are everywhere. If you do this and stop doing that, follow this, buy this book, etc. you’ll reverse MS. These ‘cures’ are often condescending and essentially blame us for making ourselves sick. Do not fall for false hope.

I think I’m a pretty smart person. I understand my circumstance is out of my control. No amount of kale can make me well again. And because there is no known cure, the best I can do is work with my healthcare team to manage disease activity, ease exacerbations and perhaps slow progression.

The progress, severity and specific symptoms of MS in any one person can’t be predicted, but advances in research and new treatments are perhaps moving us closer to a world without MS. We hope to prevail in the end. So be encouraged, despite the hard challenges that lie ahead.