The Impact of My Age and MS
Last updated: April 2023
Way over two decades ago, I was at an early morning hockey practice and kept falling down. Not in the course of any plays or drills, not even with anyone near me, I kept falling and then popping right back up. It was very uncharacteristic of me, so out of my nature that a lot of people began to notice.
Finally, as I prepared for a drill I fell and couldn’t get back up. I was carried to the bench and the doctor associated with the team began to check me out and ask me various questions. After going through a few options, he said something that I still remember to this day: “You know, it almost sounds like MS, but you’re way too young for that”.
Living as a millennial with MS
I eventually was able to get to my feet again and seemed fine. In the days following, I began to fall a lot more, until eventually, I could no longer stand on my own. I then spent a week in the hospital as doctors tried to figure out what was wrong. It was here that, where again, my young age (very early 20s) convinced them that it could not be multiple sclerosis.
From my very first moments with this disease, my age has had an impact on both the care I have received and the way people treat me.
It started with my diagnosis
When I was trying to achieve a diagnosis, numerous doctors wouldn’t even consider MS because of my young age. All that despite having a grandfather with MS, despite oligoclonal bands appearing in my cerebrospinal fluid, and despite very visible lesions on my MRI.
Eventually, I found a doctor who was willing to say what I already knew: “Of course, this is MS”. MS is the kind of disease that can add up. The more exacerbations you have, the more damage is done, which leads to a greater chance of disability in the future. Starting treatment to slow disease progression as soon as you can is very important.
Had I had doctors who understood that my age didn’t matter, maybe I’d have started on a disease-modifying therapy a year sooner than I did. Maybe that could have made a significant impact on my life. Thankfully, these days, there is a greater understanding that young people can get multiple sclerosis.
There is even the realization that pediatric MS exists. Still, there are some people out there that think of MS as something that one develops later in life. While that does happen, there really is no age limit when it comes to this disease.
The quality of care
Age has impacted my level of care in other ways as well. The invisible nature of MS is something we are always working against. For many of us, it feels like we are always having to prove how sick we are. When you factor in a younger age, it means we have to work extra hard to prove ourselves.
In my youth, I was still a fairly well-built-looking guy and my appearance did not jive at all with the symptoms I was reporting. I know that it made some people doubt me, which ultimately affected the level of treatment that I received.
In some people’s minds, they simply can’t fathom how a younger person can have the health problems that they do, particularly when those problems are not on display. In some cases, even when there is a visible sign, they fail to treat some people seriously because of their age and appearance. For example, a nurse once laughed at me for needing a cane.
The social struggle is real
Living with a chronic illness at a young age isn’t easy. There are so many more things you need to worry about that your peers never have to think of. That can make integrating socially very difficult (and dating even more so). It pretty much guarantees that you will be an outsider looking in on some situations.
Not only do you have less in common with your peers, but you then also have trouble finding anyone who can really relate to you. At a younger age, your peers are less likely to have had a significant health issue, so even MS aside, there are few people your own age that can understand what you are going through.
I remember in the early years of my life with MS, I tried numerous times to attend support groups, only to be the youngest by about 30 years every single time (typically the only male too). While I still found some benefit and commonality there, it was also discouraging because I had nothing in common with anyone other than my illness. That’s the kind of thing that can make you feel really alone
It’s not all bad
There is never a good time to get multiple sclerosis. However, having lived with it from a younger age, I’d say that there are some unique issues you have to deal with, all at a time when you are still becoming a person.
That said, being in my early 40s now and having now lived with the disease longer than I’ve lived without it, I’m a little thankful. I know that sounds crazy, but MS has made me who I am today, and I like that guy.
Of course, I’d rather not have the disease, but I do think it’s made me a better person in the long run. I was diagnosed when I was really just becoming an adult, a time when many people face a lot of adversity. I just faced a tad more than most. That strengthened me though, and it made me much more prepared for everything else that life has thrown at me.
Has your age impacted your life with MS? How so? I would love to hear about your experiences in the comments below!
Do you ever have moments where you question your self worth because of your MS?