What This Disabled Person Wants
One of my least favorite parts about being disabled is comforting those around me through my treatments and illnesses.
What I mean by this is that almost every time something pops up, people usually respond with sadness. This isn’t something many disabled people want, including myself.
All it does is make me not want to tell people about what’s going on in my life. I’ll feel like my life is a series of unfortunate events, and that I should be constantly sad about how my life is.
I may not be normal, but I love myself regardless. My life may be a lot harder than most, but I wouldn’t be who I am without my disabilities. I’m proud to be disabled. I wouldn’t be who I am without the pain.
When I first found out the name of my disability, so many people apologized for this “hardship.”
First off, this was like Christmas morning for me. I finally knew one of the key components wrong with me. Every time I shared the news, excited, I would be returned with “sorry” and sad glances.
I felt people start to stare a little, and something felt off.
This made me uncomfortable. I thought no one truly understood how important this diagnosis was for me. This isn’t a “sorry you found out” moment, this is a celebration of identity.
I understand for able-bodied people this news may be hard, but for someone growing up in pain and confusion, this was a good day.
Imagine being told by doctors you are completely normal and nothing is wrong with you until you’re 18 years old. The entire time they told you that you were “normal,” you knew something was different about your body.
Yes, it was a lot to take in. I spent a lot of nights crying, upset by how my doctors didn’t pick up on the clues. But there was a relief in knowing I was right. I knew I wasn’t crazy for thinking my body was different.
Ever since then, I’ve been having countless surgeries. This isn’t new for me, but many able-bodied people don’t really understand that.
Most people may only need one or two surgeries in their entire lives. I’ve already had over a dozen, and I’m only 23.
Any time I have a new procedure or issue pop up, people respond with sadness.
One time, I remember telling a few friends I needed a surgery. Almost every single one responded with “NOOOOOOOO” and a sad face. I had to be the one comforting them and telling them it will all be okay.
Surgery isn’t a bad thing; it’s a way of keeping me healthy. This would be the equivalent to an able-bodied person going to a checkup and every friend freaks out. Why would you freak out? This is normal and a part of keeping that person healthy.
Just because my way of staying healthy is a little different doesn’t mean it’s sad. I hate when people feel sad about my conditions. Just laugh it off with me and ask if there’s anything you can do; that’s all I ask for.
Same thing with sympathy; I get very uncomfortable when people ask me about my doctor appointments. It’s very invasive to ask about the conversations I have with my care teams when my situations are so complex.
If I want to tell you, I will. Please don’t push disabled people to explain their medical problems. They will once they trust you and are ready to share.
Keep this in mind: when someone asks me about this, it is basically asking me to explain my entire life. Every issue I have is connected, and no one knows all of the connections.
The only person that does is my mother because she was the only one present for all of it. Every doctor’s appointment, every symptom … she was there.
I don’t want to spend time reliving every diagnosis and struggle to make someone understand. It is mentally exhausting. When I’m ready to share, you’ll see a blog post pop up — just like this one.
Most of the time, people will forget what I tell them, meaning I’d have to explain it all over again.
Moral of the story: there are certain ways one should act differently when hearing about a disabled person’s life. We don’t want pity or sadness at all. In the rare moment that we do want sadness or comfort, we will tell you.
For me, all I want is normalcy. I don’t want reactions to any new condition or sickness. Just act normal because that’s what medical issues are to me. It is, just like I said in one of my last blog posts, my “normal.”
I know these reactions come from a place of compassion, but they make me feel worse.
Most people with disabilities have a chaotic life. The last thing we need is an overreaction from friends and loved ones. Ask the person what they need, and they will tell you. Don’t cry or act sad in front of them; the ill person shouldn’t have to comfort someone over their condition.
Just keep that in mind the next time your disabled friend or family member has another medical crisis. Remembering this will help them more than you realize.
Sincerely, Abbey