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It is weird to live with a disease that you know there is no cure for. It is also weird to live with a disease that isn’t going to kill you either. MS is a parasite that grabs a hold of your soul and refuses to leave. You didn’t invite MS in, but once it is here, it is going to be with you for the rest of your life. Again, weird.

So, what is a successful health outcome for someone with a chronic incurable disease? To put this in context, let me speak about bronchitis. When I was living in Massachusetts, I could tell you what time of year it was based on whether I had bronchitis or not. As soon as the snow melted and the flowers bloomed, that pollen was going to give me a bout of bronchitis.

I could feel it coming on. The shortness of breath, the wheezing, tiring after taking a couple of steps were all familiar signs that told me I had to get to doctor as soon as possible. Once I went to the doctor, a series of tests would confirm that I had bronchitis and I would be prescribed medication to treat it. Within a couple of days, the bronchitis would be gone and I could breathe again, allowing me to resume all of my regular activities without restriction.

To me, having symptoms that make your life miserable and then treating those symptoms so they go away and don’t affect your everyday life is a successful health outcome. Even though I know my bronchitis is probably coming back next year, it is cured for now which is perfect. 

In many ways, this is like living with MS. I know MS is going to show up every once in a while, and I will have to go see a doctor to put the fire out, which might involve some kind of treatment or therapy. If I can live through that relapse and regain my functionality, however, then that is a successful outcome to me. 

I expect to have another relapse in the future. Unlike my bronchitis, which would happen every spring, MS is unpredictable. So, I have to always be prepared that a relapse can happen again, even though I hope that it won’t. 

People ask why I take MS treatments if there is no cure. How do I know that they are working? 

With MS, treatments are different. I judge a successful outcome with MS treatments based on the time between relapses. When I was first diagnosed, I was on a platform treatment and I had three relapses within 18 months or one every six months. 

Then, I tried a new treatment and I didn’t have another relapse for three years. (The only reason I had a relapse is because they took me off of my treatment because of a surgery, but that is a story for another time). Then, I didn’t have another relapse for six years. In that case, I switched insurances and they did not authorize my treatment in time (again, a story for another time). 

Do I know my MS treatment is working? I believe it is because I have not had another relapse in the four years since my last one. I am also not willing to switch medications or take a treatment holiday to find out. 
While MS is a chronic, incurable parasite of a disease, you can experience positive health outcomes. You can have symptom-free days, months, or even years. Like any other condition, even common ones like bronchitis, if you follow your recommended treatment plans and see your doctors on a regular basis, successful health outcomes are possible. As long as you are willing to put in the work to manage your MS, then you too can be successful.