One of the most painful conversations I’ve had: last year, I confronted an old friend about feeling excluded from outings and I didn’t expect what came next… she said she felt like she was sometimes my “caregiver” instead of my friend. I was completely stunned because she only helped me with things any of my friends would do for me. That moment felt as if a piece of my independence got ripped away, especially because I’ve worked so hard to keep it.

There’s a huge difference between a caregiver and helping someone as a friend. A caregiver assists you with your everyday activities, like: going to the bathroom, getting into bed, showering, changing clothes, cooking dinner, etc. There is absolutely nothing wrong with having a caregiver, but my capabilities of doing everyday things on my own are still there and I do not require one.

My friends only help with things like setting my drink down on a table, putting my wheelchair in the car, giving me a hand to transfer to a chair or couch, or even helping me up from falling when I do so.

When it comes to disability and friendships, it gets tough because not everyone seems to be willing to go an extra mile for you. I would do so much for my friends if it were the other way around, and plus, aren’t friendships built on connections, not physical-abilities?

And of course, when people don’t want to help anymore, it leads to exclusion and no actual confrontation. Some people just don’t realize how this deeply affects us, and can be… yup, I’m gonna say it… selfish.

I’ve talked to some of my friends, who also have FA, about this and I know I’m not the only one who feels this way. One special friend in particular, Noah, recently told me that he was kind of upset about not being invited to a party his friends were at. He started to ask some of the same questions I ask myself. I told him that his worries are valid and he isn’t alone. He also made me realize that I’m not alone. (And kudos to him for giving me the idea to write this!)

These are the “usual” questions that go through my mind when friends exclude me, and maybe you can relate too: “Is it me? Do they not like me? Are they upset? Did I do something wrong?  Are they talking about me behind my back? Are they talking about me right now?…”

Having this conversation with yourself is not fun because then you end up creating fake scenarios and more worries in your head. And if you deal with frequent anxiety like me, then you know that it’s not good for your mental health. Now let’s try adding FA into the mix: “Is it because of FA? Do they not want to deal with my wheelchair? Is it too much for them? Do they not want to be seen with me? Do they feel like they have to ‘take care’ of me?…”

People don’t think these questions run through our minds, probably unless they’ve been in similar shoes. Although people can be selfish, it’s important to focus on the ones that aren’t. To give credit to the friends who never exclude. The ones who don’t mind helping you carry a drink to the table or wheeling you with them when you go somewhere together. The ones who don’t think of themselves as your “caregiver.” The ones who don’t treat you as an inconvenience. All in all, be kind to everyone, but not everyone deserves your friendship. 

My friends who have FA, AKA my FAmily, are some of the most amazing people I’ve ever met. And no one, FA or not, should have to feel alone when it comes to upsetting experiences like these. I’m glad Noah and I are here to share ours.

Some of my FAmily from the October 2022 Energy Ball! (featuring Mekayla, Kyle, Laurel, Alison, and Jessica)

And if you would like to read about Noah’s story (yes, he’s also a writer!), click here!!