I sometimes feel like I’m in a slightly murky “grey area” when it comes to MS. A lesser populated no-man’s land; caught between youth and veteran. MS is a young person’s condition; most people are diagnosed in their mid-twenties to mid-thirties. When I meet fellow people living with MS, who are in my age group, more often than not they were diagnosed relatively recently. Now I think I’ve already hammered home the fact that MS is wildly variable from person to person, so I’m not saying that the longer you have it, the more impact it necessarily has (although, that’s likely), but sometimes when I talk to people roughly my age, I don’t always feel like I can relate anymore. My MS is starting to take on a new hue; one that feels less familiar to me, and less represented. When I seek the stories of those who are at a similar psychological and physical ‘stage’ as me; who’ve lived with the condition for as long, I typically find it in people who are 10 or 15 years my senior, and at a different stage in life from me.
After a recent exchange online, however, I’m beginning to wonder if us young veterans aren’t such a rare breed of creature after all. That maybe we’re just too afraid, or ashamed, to share our whole story. The social media narrative of MS sometimes feels fairly narrow; and it’s easy to understand why. Social media is largely a young person’s game, and it’s also a game you play when you’re feeling at your best, to showcase the highlights. But this online presence leaks into the overall perception of MS, and into the information and dialogues shared through MS organisations. It infiltrates the overall understanding of how you “should be” as a 20-something living with MS, and it’s incomplete. I didn’t realise just how incomplete until I posted a clip of myself exercising on my Instagram story, and someone messaged me about it.
The clip showed me performing a Pilates exercise in which it was abundantly clear that I had significant muscle fatigue and was barely able to lift my leg. I very nearly didn’t post the clip because of how “disabled” it made me look. First problem. I also didn’t want to appear “negative” in my portrayal of MS, and I very quickly posted a second clip of my much stronger leg in somewhat of a panic. Second problem. And finally, I was embarrassed. Embarrassed that my body wasn’t moving in the same way that I see other 20-somethings with MS still able to move their bodies. Third problem.
I wasn’t demonstrating perfect poses and strong movements in spite of MS, and I felt the smallest twinge of shame in that. Part of the problem with incomplete narratives is that it makes you feel like you’re the exception, you’re not trying hard enough, it’s entirely your fault and has nothing to do with the fact that you’ve had MS for longer.
I decided to post the video anyway because I came to the conclusion that there is nothing inherently wrong with the way my body moves; I can’t help it, so why should I hide myself away in case it makes other people feel uncomfortable to see? And I’m so glad I did. That evening I saw a message ping into my inbox; “this is so relatable”, it read. The author of the message (another “young veteran”, it transpired), told me that they felt so weak in comparison to the people who are “always running”, and that my video had inspired them to do a few shaky minutes of Yoga for the first time in months.
I realised that it’s not “negative” to post about my truth, my reality, my ‘not-behaving-in-the-way-it-used-to’ MS story on social media. It’s necessary. I shouldn’t be trying to force my narrative into a box that slots in nicely with the experiences of other people my age. I have realised the absolute importance of many different voices telling many different stories. MS is an illness often defined by it’s variety after all.
So here’s to the importance of sharing our own unique, diverse story – each one constituting a part of a whole, diverse narrative of what it means to be a young person living with MS.