Guest Post by Jessica T.
Five years ago, my brother was diagnosed with multiple sclerosis. It came as a complete surprise to the entire family; none of us had ever even heard of the disease. We couldn’t understand why an otherwise healthy young man would suddenly get the disease. Was it genetic? Nobody in our family had ever been diagnosed before. Was it fatal? How would it affect his life?
We learned that multiple sclerosis is a disease where the immune system attacks the myelin sheath, a substance that surrounds and insulates the body’s nerve fibers. Think of myelin as the protective rubber that covers wires, and the wires as the body’s nerves: if the rubber becomes damaged, the wires are exposed, and messages sent through the wires become disrupted. The symptoms and severity of the disease varies widely among those affected by it, so people with multiple sclerosis may have very different experiences even though they have the same disease.
Over the years, my brother has come to terms with the diagnosis and, despite the ways multiple sclerosis has changed his life for the worse, everyone in our family has been amazed by how he has coped with his illness. MS affected his ability to walk, but not his ability to ride a bike. So rather than walk places, he rides his bicycle to get around. “My bike is my wheelchair,” he explains.
I’ve been inspired by his efforts in becoming an MS activist. Many of those who do not have MS do not understand the disease and may make assumptions about people who suffer from it. For example, standing is difficult for my brother, so he often will sit when he needs to wait in line at the grocery store. On more than one occasion, an employee has come over and asked him to move when they seem him sitting on the floor because they assume that he is loitering. At first when this would happen, he would react with embarrassment and anger (and understandably so). But now, he explains that he has a disability, and he writes a letter to the company describing the incident and asking that they consider the possibility in the future that someone sitting in their store might be doing so because it causes them pain to stand.
Having a sibling with multiple sclerosis can be challenging. It can be difficult to watch someone you grew up with live in pain, and you might feel guilty that it happened to strike your sibling instead of you. You may wonder if you have an increased risk of developing MS. Most sibling studies show that having a sibling with MS raises your risk of also getting it, but the percentages for how much your risk increases varies greatly. More research needs to be done to determine what causes MS and how to cure it.
If you have a sibling with MS, it’s important to be supportive of them. If your sibling has MS, being there for them means they don’t have to go through it alone. For all of the negative way my brother’s MS diagnosis has affected our family, the one positive effect has been that it’s made us closer.