When you tell people you have MS, everybody has something to say. Many of them are supportive, but it is amazing how few know anything about MS. If you’re like most people with MS, you’ve probably heard hundreds of MS myths from your family and friends. Thankfully, the best way to dispel MS myths is with facts.
Read on to learn about the 3 most common MS myths and how you can respond when people bring them up.
Myth: MS is a death sentence.
People usually don’t come right out and say this one, but you can see it on their faces. They look like they have just seen a ghost. Fear and pity play across their faces as they try to hide what they are really thinking. And then, once they regain an ounce of composure, “I’m so sorry.”
How to Respond:
“I appreciate your concern. It is a chronic illness that I will have to fight with my whole life, but there are a lot of treatments available to help me through it. I’m grateful to know that most people with MS live long and active lives. I always thought that MS was a death sentence, but it turns out that people with MS live just as long as other people.”
Myth: Aren’t you too young to get MS?
When people ask this, it can feel a little judgmental - like they don’t believe you about your own diagnosis. Usually, they are just misinformed. The myth that MS only occurs in old people is pervasive, despite the fact that most people are diagnosed between the ages of 20 and 50. And there are cases of teenagers and children being diagnosed with MS too.
How to Respond:
“Actually, people can be diagnosed with MS at any age. Most people are diagnosed between 20 and 50, but occasionally even children and teenagers are diagnosed with the disease. I’m just thankful my doctors caught it so early so that I can start treatment and live my life fully.”
Myth: My mom/aunt/cousin/friend has MS, so I know what it must be like for you.
Your friends and family members just want to be supportive. When they mention someone else who has MS, they likely assume that your MS will follow a similar path or that you experience it the same way. These people are trying to connect and show sympathy for your diagnosis by relating it to experiences they have had.
How to Respond:
“That’s interesting that your mom/aunt/cousin/friend has MS. I’ve met a lot of people with MS since my diagnosis, and it is amazing how different the disease is for each of us. Our symptoms vary so much it’s hard to believe that we all even suffer from the same thing. I think that’s one of the scariest things about MS - not knowing how it will affect me down the road, but it also gives me hope because just because one person’s MS is really bad doesn’t mean that my MS has to take that same path.”
How do you respond to MS myths?
It can be frustrating when well-meaning people talk about your MS. Usually, they just want to be helpful and supportive; they just may not have the knowledge or the personal skills to know how to appropriately address your illness. Finding the patience to deal with these myths will help dispel them as more people learn the truth about MS.