Whose MS Is It Anyway?

Last updated: January 2022

There is much to be said about MS as an identifier.

Are you a patient? MS warrior? An advocate? A caretaker? Or is MS not even part of how you look at yourself? Is it simply something you have, but that's also where it starts and ends? Maybe you're like me, and the feeling changes depending on the day, mood, and how much your symptoms have been affecting you lately.

Understanding our identities

I wrote a bit about identity in my article Double Minority and Learning from Discomfort, where I discuss the intricacies of coming to terms with my sexual orientation. In it, I describe how it's part of my identity in some scenarios and others - not at all. Identity as a concept is elusive, and I don't believe we necessarily have to define it. But whether we are conscious of it or not, how we identify ourselves can go in as many directions as MS.

I'm writing about this because I recently came across a podcast about the topic of narrative and identity. In it, the host and guest discussed the matter of "Whose narrative do we believe in?" Do we write our own identities, or do we live based on our perception of the world's perception of us? Can we ever decide for ourselves, or will we always be a product of the world around us? Can we separate identity in such a way?

MS and the impact on our identity

If those thoughts give you a bit of a headache, you're not alone. There are probably as many answers as there are people to those questions. But it's an intriguing thought which, regardless of our personal opinion, can enlighten how we look at ourselves in relation to multiple sclerosis. And understand in which narratives we believe.

I think that identity is never a one-way street. I have an identity depending on the scenario. People create identities for me all the time without knowing anything about me. Maybe they are one of the same. However, if we don't give it some thought, it can quickly become dangerous territory. Sometimes we get into the habit of believing the identities and narratives placed upon us by other people. And if we can't create or understand our own, it's too easy to believe in someone else's story of our lives.

So, as people with MS, whose version of the disease do we end up believing? We can probably never know for sure, but I think some narratives can be exceedingly damaging. If we don't understand them, it can blanket all we think we know about ourselves with MS.

The opinions of others

I've ping-ponged my way through believing in my version of what this disease signifies to me and what people tell me about it. For a while, it was my neurologists' perspective that mattered most. Then, my family and friends. Later, society at large (the worst one).

It's easy to believe that MS is bigger than myself and that no matter how hard I try to shake it, let it be something I have rather than something that is me. I find it easier to navigate when I decide for myself but more problematic when sharing it with the world. Sometimes, I want to identify with it because it makes me feel like I'm in control. It's mine. I decide. And sometimes, I want the world to tell me what it makes me. Not that it's any of their business, but what else can one do when one feels lost?

There's no right answer

The more I think about it, the more complex (and self-absorbing) the topic gets. I would venture to guess most of us fall in the "it depends on the situation"-camp when dealing with this. Luckily, I don't think there is a way or need to get out of that. But I want to stay vigilant on the negative narratives we can start to believe and subsequently add to our identity.

Addressing negative thoughts

After a few years browsing the MS subreddit, reading thousands of comments and posts, it's become crystal clear to me: a lot of us have some nasty thoughts about our MS.

"Who will find me attractive now that I have MS?"
"I will never be able to give my kids what they need because of this disease."
"Why should I strive when I can never reach my goals? MS makes it impossible."
"I feel like such a lousy partner. I will never be able to support them through this."

Owning our identities

These are dangerous narratives about our identity, particularly when based on limited information. And at the end of the day, whose narrative is it? Whether you are the one telling yourself you're not enough or someone else, it doesn't have to become your truth.

As unsatisfying as it is, I'm putting this topic in the "yes, and…" category, labeled "handle with caution". Let the dough rest. Please don't open the Crock-pot lid before it's time. That sort of thing, you know?

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