Managing Disability When You Don’t Look Disabled

Whenever someone would tell me I was too young to be in so much pain, I wanted to tear my hair out. Pain doesn’t discriminate for one, and for another, that’s just not helpful. 

Looking back, it’s still hard to comprehend what happened. Weird leg cramps when running. That’s where it all started. 

And for a long time - years - it was only in my calf. Once it spread from my foot to my hip, it was basically like getting hit by a truck. 

Although it didn’t relieve all my pain, it wasn’t until my spinal cord stimulator implant provided some pain relief that I realized how much the pain was affecting me. Before, I’d nap almost every day. Now, I’m lucky if I can take a nap at all. It was frankly startling to realize how much of a brain fog I’d been in when my pain was at its worse and made me wonder how much it negatively affected me in other aspects of my life, like my work or job interviews. 

Although the SCS implant greatly improved my quality of life, it’s still a significant struggle. I’m extremely limited in the kind of shoes I can wear; clothes can be extremely irritating to my leg. 

I’m lucky, I know that. I know I live with serious pain everyday but I know I’m still lucky in things I can do. But that doesn’t make living in pain everyday easier. 

One thing is…I really lost a lot. Constant, severe pain really limits what you can do. I lost opportunities. Fell away from friends. Became really antisocial in a way that hasn’t yet been fixed. I was dependent on others for many things because I couldn’t physically do them. Even now, when I look at moving out, it’s all about the least amount of stairs possible or, ideally, no stairs. Right now, an apartment with an in-unit washer and dryer is the dream. I’d like to get a second job and most things that would fall in that category require standing and walking. 

Barring a miracle or scientific/medical breakthrough, I’ll never run that half. I’ll never be a firefighter again. I never got to go on a call with my youngest brother; it was never the four of us. It’s hard to come to terms and to understand. It’s beyond frustrating not to be able to know what caused the CRPS because there’s theories I have with a lot of anger attached. It is really diffiicult trying to find a way to come to terms with that.

It’s fear. Fear of it spreading somewhere else. Fear of hurting my bad leg some other way. I want to be able to go somewhere and not have to worry about how I’m sitting. Constantly having to adapt. It’s not just someone believing I can do something, that in some way I’m strong enough to fix it because I’m not. 

And you know what I don’t need and simply won’t tolerate? Judgement. 

I don’t look disabled. I like to think I look pretty normal, albeit overweight. Sometimes I need a cane and I hate it. I also hate being told “if it helps, it helps,” because I guarantee the vast majority of those people would be just as frustrated if they entered their thirties needing a cane. 

I have good days and I have bad days and those can look very different. Some days I might be able to do a lot without the cane. Others the cane might not even help. Last fall, I went to the zoo for the first time in over five years. I didn’t bring my cane (probably should’ve) and managed (barely) but I paid for it the next day. Today, I couldn’t consider going without taking my cane. Tomorrow could be completely different which I doubt but you get the point. 

The photo on the left shows my mom and me at Picklesburgh last summer, and the photo on the right is from earlier this month at Steel City Con, where I had the opportunity to purchase a lightsaber cane so that at least I have a cool cane now. But these are both events that I could not attend without mobility support.

Even sitting and standing can go back and forth. My leg hurts, you’d think I need to sit. But sitting can be a challenge and then there’s times when standing is what relieves my pain. I don’t think it’s typically very apparent how much pain I’m in…or how much pain I’ll tolerate to do something like stand around and BS. 

I’m back in the gym and I think that can throw people off. Myself included. I started off way too strong which made things unnecessarily difficult. It took me awhile to get on track. I had to completely change my workout playlist because my pre-injury one got me too amped up. I’d go too hard. Even now I have to remind myself it’s about being able to move, not about pushing my limits. My brain still wants to go and see how far I can push myself and my body is like lol no dude.

The world isn’t made with disabilities in mind. That might sound presumptuous but you don’t realize how few seats there are when you need one until you need one. There’s an event I enjoy going to that I stopped going to because there was extremely limited seating. Standing in line can be extremely difficult. I don’t expect the world to have all the solutions but it’s weird when you have to account for standing in line as part of an activity because of how it’ll affect you. 

I had an interaction recently where my disability was questioned and I was using my cane. It’s infuriating. That’s where this is coming from. It’s kind of insane how I can be doing so much better than before but still struggling seemingly just as much. I’m grateful the fog disseminated. 

I want to do so much more. I’m currently looking into additional treatments and looking for a pain management doctor. CRPS is a bitch. This was basically a world salad bitch sesh. But I’m tired, hurting, and tired of hurting.