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Having a Chronic Illness Doesn't Make Me an Inspiration

I cherish communication with friends, especially since I spend so much time at home. They’re one of my major lifelines to the outside world. They do as much as they can to be supportive, and I appreciate their continued efforts to include me in their lives, even when I can’t see them that often. The friends who text, email or message me every so often to say hello, invite me to their social events and offer encouragement probably don’t realize just how much they mean to me.

There’s one word though that has come up a few times which I want to talk about: inspiring. In talking about my illness with friends, I’ve occasionally been told that I’m inspiring, and every time I hear it, it makes me very uncomfortable.

I know the argument already: “They mean well.” Of course they do, and I’m aware of that. My friends are fantastic people, and I know that they don’t choose their words with the intention of upsetting me. I also know that talking to a friend who is going through a completely unfamiliar situation can be difficult. Maybe they’re walking on eggshells and they don’t know what to say, or they really don’t want to talk to me about my medical issues, so mentioning inspiration seems like the safest option. Either way, I get it.

So let’s preface this conversation with this statement: I know that when someone says I’m “inspiring,” they mean no harm. I’m not going to bite someone’s head off for a comment they genuinely believe to be comforting and encouraging. I’m just going to say, for the record: it’s neither of those things to me. I don’t think people understand why this is such a loaded comment.

What does “inspiration” mean, anyway? Merriam-Webster defines it as such:

  • “something that makes someone want to do something or that gives someone an idea about what to do or create”
  • “a force or influence that inspires someone”
  • “a person, place, experience, etc., that makes someone want to do or create something”
  • “a good idea”

I’m not sure how my mere existence as a person with a chronic illness meets any of those definitions. Perhaps I actually have done, written or said some things in my life that have qualified as inspirational or have helped others, and that makes me incredibly happy. However:

  1. I’m not inspiring because I have a chronic illness or disability.
  2. I’m not inspiring because I take medicine or undergo tests or procedures, even if they are unpleasant.

Wait, though — am I inspirational because I occasionally find the energy to do interesting things and maintain small slivers of “normalcy” — that is, pre-chronic illness life? Does that count as overcoming obstacles or living life to the fullest? Can it inspire someone to do the same?

Here’s the big secret that really isn’t a secret at all: I’m really not overcoming anything. This isn’t some special episode of a sitcom; it’s my life. Being a regular at doctors’ offices and medical facilities isn’t how I’d prefer to spend my time in an ideal reality. Outside of that, I’m not doing anything I wouldn’t have done when I was well — I’m just doing far less of it.

What, exactly, is that inspiring you to do?

I’m not opposed to inspiration in general. It’s a great thing. We all get inspired; I understand that. There are those who serve as our models in one sense or another, whether it’s for personal behavior, work or spiritual guidance. There are those who provide solace, solidarity or strength — maybe they’ve been through a similar experience or said something with which we identify. Sometimes it really does help to know we’re not alone and to learn from others who have been in our position. People with chronic illnesses might support and encourage each other. We might find hope in those who are doing well.

There are those who are so impressive that they garner admiration, love or fandom. Are any of those people inspirational? Maybe there’s some crossover, maybe there isn’t. I’m not immune to this; I have many, many favorites in various fields. There are songs, works of art and literature, dance pieces and speeches that have resonated in major ways for me and changed my life. There are individuals whose work I greatly admire, like Marie Curie and Sally Ride. We’d be here for a long time if I named all of them. Dare I say it, some have inspired me and influenced my life.

However, inspiration shouldn’t be drawn at someone else’s expense. When I really need empathy and support, do you think it helps me in any way to hear you’ve pulled something from my illness for your benefit? Think about that for a moment.

Instead of telling someone they are inspiring for going through medical procedures or being sick, why not truly talk about it with them? Maybe it’s not “inspiring” that your friend had that biopsy; maybe it hurt and it was stressful and the stitches are pulling, and that’s what they need to discuss. Maybe it was a breeze, they didn’t feel a thing and they’re grateful it’s over. Let them tell you.

If you’re actually inspired to do something, let it be this: understand that if there is someone in your life with a chronic illness, they might have a rough road ahead of them and might really need your heartfelt friendship, support, assistance and encouragement. Just walk beside them, truly listen, believe what they say and offer help where you can — be it emotional or logistical — without expecting them to wear a mantle of “inspiration.”