Young People Living with MS: The Need to Engage

Aoife Kirwan
Written by
Aoife Kirwan

One of the main things I hear when people learn that I have multiple sclerosis is “but you are so young.” For some reason MS is associated with people who are older than me. I think about why this is the case. Perhaps it’s because the effects of MS are more visible in someone who is older and possibly in a more progressed stage of the illness. I think young people are sometimes reluctant to be visible with MS. When I was diagnosed, I did not know any other young people living with MS. I knew of some older ones, but nobody my age. I craved that connection, just to know somebody else was on a similar journey at a similar age.

The things you consider a problem at 23 and the things you consider a problem at 43 are very different. When you’re 43 and you find out you have MS, you may already be married, have a house, have children, have a career. When you’re 23 you are only beginning to lay the foundation for your future. Once you are diagnosed you have to factor MS into the decisions to do all of those things.

For me, I initially felt that having everyone know about my diagnosis was unnecessary. I didn’t want to think too much about it in the early stages as I was trying to finish college at the time. When I thought about MS then, I did associate it with people who were older, and people who had mobility issues, because that was all I knew of it. I didn’t want to be labeled at 23. I felt that if everyone knew they would look at me differently – that they would treat me differently. That was not something that I was interested in. I guess in my mind, if I associated MS with older people with mobility issues, then so would everyone else. So instead of me being a normal 23 year old, I felt I would become this 23 year old who was just waiting to become older and less able-bodied. I write this and feel horrific. I look at things now in a completely different light, and I am not as ignorant to the facts as I was back then.

What I would like to see is a higher visibility and acknowledgement for young people living with MS. I understand that many keep it quiet, so that it is a less intrusive factor in their lives, but it doesn’t have to be. Interact, contact, connect with other young people living with MS. Let each other know that we are all united on this journey together. Ask, question, answer, share advice and knowledge with each other. Become part of the MS community and change the stereotype of what a young MSer is. After all, we’re not people living with MS, we’re people living.

So to all you young folks out there, who’s with me?

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