Facing a Future with MS
I’ve heard conversations about how people who are recently diagnosed with MS don’t want to see people who have lived with MS for a long time and have accumulated disability. The prospect of thinking a wheelchair, or walker, or cane might be in their future is a hard reality to live with.
What I want to share
You don’t scare me, and I hope you can say the same that I don’t scare you. Yes, I’m talking to all the other millions of people in this world who also live with multiple sclerosis. I hope that we have grown beyond looking at others with MS as being our image in a mirror and fearful that we are seeing our own future. Thanks to my work in MS advocacy and research, I have friends who happen to have MS in all its different forms. I have friends who have absolutely no visible signs of MS, while there are other friends who are dependent on wheelchairs for mobility. Each relationship is treasured, and I won’t allow my own fears of my future to keep me from being with them. By avoiding settings where other people also have MS, I would be denying myself the opportunity to laugh with, compare experiences and so much more with some of the best people in the world.
We get mixed messages about what the future holds for people with MS and I want to share we really don’t know if it applies to everyone but we have good ideas of what will help delay or stop progression.
Disability and life span
One of the first questions from newly diagnosed people is their own mortality. Will MS kill me or change my life expectancy? Will MS force me into a wheelchair? It used to be that people with MS lived, on average, 7 years less than their peers and were almost guaranteed to at least need a cane or more for mobility, but that statistic is due for an update, and I suspect the difference is much less, if at all.
Why do I think that? Before the 1990s when there was no MS drug therapy available, upwards of 80% of people with MS were facing a long-term future of needing a wheelchair. With the disease unchecked, it was merely a waiting game for MS to ravage the body. But that is no longer the case. We have DMTs that stop or slow MS and change the odds of disability progression.
Disease-modifying therapies weren’t around until 1993. When I was diagnosed in 2008, there were only two types of DMTs (interferons and glatiramer acetate) available. Now there are almost 20 DMTs approved for use in the United States. Each and every one of these drugs offers us the chance to delay or even stop the decline from MS.
Our futures are different
In the future, as more and more of us are treated for our MS, we will look more alike than our current state of various abilities.
Get over the fear of seeing the future and look for others who have MS, in obvious places such as online at MultipleSclerosis.net, attending a support group (either in person or virtually), or ask your neurologists for suggestions. There are a million of us in the United States alone living with MS, and almost 3 million people worldwide. We are pretty easy to find.
Learning from others with MS
There is so much we can learn by connecting with others who also have MS, and it’s a shame to be scared off from meeting them for fear they mirror our own futures. If you take my challenge and make the effort to meet others with MS, you will meet some of the kindest, most empathetic, and understanding people in the world.
We are all different
Despite the medical advances, the reality is each of our experiences will be different than that of the next person diagnosed with MS. It’s also true our own MS path choices are dramatically different than what was offered 20-30 years ago. Even more important, though, seeing each other should never be frightening because we are all in this together.
Wishing you well,
Do you have a fear of needles and take medication that requires injection?