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Don’t Call Me Brave, I Didn’t Choose The Ill Life

“You’re such an inspiration!”, “You’re so brave”, “What a warrior you are!”, “I’m so proud of you!”, “You’re my hero!” These are just a sample of the types of comments that so many people with Multiple Sclerosis often get from other people. While they are exceptionally well-meaning and even appreciated, I think there are many in our situation that cringe at those phrases. The main reason it may give us pause, as we try not to make a face, is that it very much highlights the very thing that so many of us are trying hide: that we are different to you.

Who is brave?

When I think of bravery and inspirational people, I tend to think of people that chose a path when they could have avoided it. Like people who volunteered in WWII, or first responders who charge into an accident scene despite the danger to themselves, or even teachers (low pay and all those kids? Whew, that seems brave to me!). I know I never volunteered to get Multiple Sclerosis. Trust me, if I could give it up, I’m sure I would. There would be few situations where I’d probably choose to get an incurable disease. But, I have it, and like most of us with it, I survive. You really have no other choice, you can either go with it and do your best to thrive or give up and, I don’t know, not survive? I don’t know because people don’t really give up. We really aren’t given the chance to give up. That’s kind of my point: we aren’t really given a choice at all.

There is bravery though

Our choice or not, I do admit there is a lot of bravery I see in this disease. I don’t think we ever see it in ourselves, but being a part of the MS community, you see a lot of brave people. Not only in those who have the disease, but in their families, their caregivers. Those are the folks that are brave, those are the ones that stick around when they don’t have to. Not everyone sticks around, not everyone can handle it. Those are the truly brave people of chronic illness, the caregivers and the people who don’t have caregivers and still somehow manage to get by. To me, the people that stick around and help their loved ones are every bit as brave as the soldier in WWII, because it’s not easy, and they can walk away at any time. It takes tremendous internal fortitude to stand by someone who is chronically ill.

Words mean things

As I mentioned earlier, the main cringeworthy factor of phrases like “You’re so brave”, is that it tells us that you don’t treat us as equals. Maybe we aren’t; we do have some difficulties, and we do go through things every day that you can’t imagine going through. However, we don’t necessarily want to be reminded of that. I mean it when I say I’m always doing my best to blend in, to look like everyone else. From fake smiles when I’m having tremendous, burning pain to propping myself up against a wall to prevent myself from falling, I go through great lengths to appear normal. I think most people with MS do. Even if you’re rocking a cane, wheelchair, or other mobility device, you’re still trying to look the same as everyone else. When someone calls us an inspiration, that tells us that all that effort was for naught.

We know it’s awkward

Now, I understand how awkward it can be to some people. Noticing our difference, but not knowing what to say. I think all of the people that call us inspirational are simply trying to say the right thing. I get it, I do, and I don’t get mad or correct anyone, because if anyone knows how to be awkward at conversation, it‘s me. I still thought this was something worth bringing up though, because I know a lot of out there have those cringe-worthy moments all too often. Just know this: yes, we have an illness, but we didn’t choose the ill life, it chose us. At the end of the day, we’re people just like you, simply trying to live our best life. The same as you would do if you were diagnosed with MS, I guarantee it. If you aren’t sure what to say, ask me, I know I’d rather explain my situation then for you to assume. If you still don’t know what to say, and you’re feeling awkward because I’m young, walking with a cane and slurring my speech, maybe just say “hi” or “good to see you”. Let’s save the honor and inspirational remarks for those that really deserve them.

Thanks for reading!

Devin

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Comments

  • Sandee Hess
    10 months ago

    I like what you have to say. I never quite thought about it that way and I like the positivity. I would like to share it with a new support group that is starting soon if that is okay with you.

  • Devin Garlit moderator author
    10 months ago

    Thank you @Sandee Hess, it’s always OK, and even encouraged, to share!

  • SueK
    10 months ago

    I understand what you are saying and how you feel, but I cannot relate to it personally. First off, I do not look different. I do not stand out in a crowd anymore than the next person. All people are different, each with their own idiosyncrasies. Who am I to question how or why? It’s just the way we humans are. The only ones that stand out do so for extraordinary reasons, for what they say and do to make this world better for others. Those that do not give up, because despite what you say, there are those that do. Unfortunately, the truly sad cases, those that throw pity parties 24/7 instead of facing their adversities, those that reject advice how they can “fight a good fight”, those that sit back bitching about how unfair life while doing nothing to change their situation do not look as much “brave” as “pathetic”. I know that sounds cold, but I. Have seen far too many people calling attention to their plight by wearing it on their sleeve, complaining that no one could possibly suffer as much as them. They choose not to blend in.

    If I mention I have MS, which I do not make a point of doing very often, no one says, “Oh my! You are so brave!” It’s more like, “I’m so sorry to hear that.” I smile and answer, “Thanks, but it isn’t the end of the world. I have fought far bigger monsters than this and whooped their butts.” Like you mention, being brave is knowingly and willingly putting yourself in harms way for the sake of others. And my husband and kids are not “brave”. They are compassionate and loving. No one is holding a gun to their head to be here, in this with me.

    So no…. maybe some choose to be different. And if that’s what makes them feel better, so be it. I just choose to be me. My vehicular may not be a polished,high performance model, but it still gets me where I am going to.

  • buki6
    10 months ago

    Devin I have to say well put. I have been trying to explain this exact thing to people who say your so strong.
    So thank you.
    Darcy

  • Devin Garlit moderator author
    10 months ago

    Thanks so much @buki6 (Darcy), very much appreciated!

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