Multiple sclerosis (MS) is like personality — it’s very different from one person to another. The symptoms are unique to everyone diagnosed with MS and may be misunderstood by people who don’t live with the condition.
March is Multiple Sclerosis Awareness Month, so here we highlight two members’ experiences with others who could be better informed about MS. The more we all know, the better we understand, the more authentic empathy we can share.
Bri: I am diagnosed with relapsing-remitting multiple sclerosis. I learned about the illness upon my diagnosis. MS is an autoimmune disorder where the immune system attacks the brain, spine, and myelin sheath around the nerves.
Giovanni: I am a patient with multiple sclerosis.
The struggle behind the smile.
Bri: I hear the words, “(Name) has multiple sclerosis, and they’re doing (job, school, hobbies) just fine.” I was hurt, because not every person is the same. I have a friend who’s in the next stage of MS and she has a lot more going on. Just because someone is doing something you are not doesn’t mean you’re not just as strong. We all have our battles, even with the same conditions.
The reason it hurt so bad to hear that once again is because no matter how hard I fight, I’ll always be seen as not doing what other people can.
Giovanni: [Shortly after my diagnosis] I was sailing every weekend and training in the pool daily. I [did] my best to hide my symptoms and face the day. I remember after swimming a long distance that some people began to question the severity of my condition. For them, my illness is not that serious: “How [is] a person with multiple sclerosis able to swim for that long non-stop or sail every weekend?” [Hearing that question, I feel] hurt and broken.
I have to put in a lot of effort and dedication, train for months, overcome many obstacles to be able to achieve my goals. I guess it is not easy for them to see all I’ve suffered to get where I am. They don’t see the struggle behind my smile.
Read Giovanni’s story about his big swim: a two-mile Alcatraz crossing.
Life is not over after diagnosis.
Bri: It would help if the people around me understood that this is my personal battle. Just like anyone with an illness, they have their own battle. It would be amazing to have understanding support, where I’m not trying to meet someone’s expectations other than my own.
Giovanni: [People should] keep those mindless comments for themselves.
Bri: The best advice I could give [others living with MS] is reach out. Don’t struggle alone. There [are] many amazing support groups on social media and usually a page for where you could find in-person support groups.
Giovanni: Do what you can while you can. Life is not over after the diagnosis. All you need to do is understand and adapt.
Diagnosed with multiple sclerosis in 2015
Diagnosed with multiple sclerosis in 2010
Would you like to share your experience living with multiple sclerosis or another condition that people in your life may not understand? If so, join our community.