Disable the Stigma

I honestly am not sure how to begin this, though my instinct is to start with a disclaimer. Something like 'Just FYI: My experiences and issues are not as bad as others and I'm sorry in advance for whining'.

That is where the problem lies, I suppose, isn't it?

I am one of many who suffers from a chronic yet invisible illness. Chronic pain, specifically. I am one who can be smiling, joking, moving fast (or as fast as I can at least), and charming the room while I do so. Yet, there's an omnipresent shadow that follows me. A fist squeezing tight. A sensation that never leaves and therefore is always in the periphery of my consciousness. I'm always acutely aware of this sensation, always affected (sometimes subconsciously) by its incessant nagging.

Pain is my shadow, my constant companion, my reminder that I am -in fact- disabled. Lest I ever forget.

How could I, though, when nobody and nothing ever lets me?

For some backstory, I am only 36 years old, yet I have had....9? I think it's 9....surgeries. That may not seem surprising but you haven't heard the best part: they were all on the same part of my body. My knee. One of those surgeries was a total knee replacement, which I had at age 25. If you need a minute to let that sink in, I understand. I did too, at least before all the “You’re how old? And here to have what done?” questions I got at the time.

It still makes people stop and do a double-take now when I mention I'm part bionic. I know that before I'm even of retirement age I'll need a revision on the joint. These things don't last forever, ironically. My doctor knew this going in but after we'd exhausted all other options (including my capacity for pain and the inconvenience of using a cane at 25) he said we just had to do what we had to do. A mantra if ever I've heard one.

Despite the imagery that comes to mind when someone says they are "bionic", let me be clear: it is not as cool as one might think. I'm not like Iron Man (at least, not body-wise....my attitude might be). I'm not Inspector Gadget and can "Go go gadget knee!" to perform incredible feats. The pain isn't miraculously gone either, which people tend to think happens when you have an artificial joint.

There's a reason you have to go to joint replacement class before you can have one.

Aside from the extreme inconvenience, often accompanied by embarrassment, at being frisked everywhere with a metal detector (seriously, some of these people should buy a girl a drink first), there is a lot of lifestyle change associated with a replacement.

In the beginning, while I was healing, those changes were more tangible. I was tired all. the. time. I couldn't work more than half days when I finally did go back to work because I was just unable to physically find the energy. A new joint has to acclimate to your body, adjusting your inner make-up in order to assimilate to you. Or something. I'm not a doctor and it was so long ago now that the only thing that, biologically, stuck with me is the need to take copious amounts of antibiotics now if I'm to have ANY sort of procedure done as infection is incredibly easy to get when you have a joint replacement.

Oh, and going along with that (as I learned with the pandemic), bacteria tends to congregate around the artificial joint so it can sometimes throw off virus tests. Fun times!

Nowadays, I am able to walk without the use of a cane, which believe me you don't realize is as big a deal as it is until you can't do it anymore. Stairs are still iffy. I had a huge milestone after my last surgery in 2019 and was finally able to go down them normally again after 8 years but it is still not the same as people without a physical disability. Every step is a conscious thought. I have to look at each step and calculate in my mind before taking it. I also do not move fast on stairs, nor do I look normal. Everyone can tell there's something going on and yet will still get up right on my back or walk around me in a huff.

This brings me back to my original point.

There's this, idea? I guess you could call it, people have when they think of disability. Like it's a dirty word, something you whisper behind your hands as you try not to get caught staring. I admit, I might even have been guilty of the same thought process prior to that fateful day back in junior year of high school when I tore my ACL playing soccer and started on this journey. I was young then, after all. I hadn't learned, from personal experience or otherwise, that disabled is not a dirty word. I hadn't learned the importance of tolerance, patience, kindness.

People treat me like I'm either a liar or a whiner most days because I do not look outwardly disabled and I’m not elderly enough to be moving so slowly. I went to Busch Gardens for my birthday this year and despite all the progress I've made, I was in too much pain by our second day to do anything at Water Country besides sit in a lounge chair. There were no chairs left when we arrived, however, and guest services seemed to believe there were no free chairs ANYWHERE in the entire place to be given. I wasn't asking for special treatment, no skipping lines or whatever, I would not be able to go up the stairs for any slides anyway. I just wanted to sit. Instead, they told us to have a nice day. On my birthday.

Never before have I felt so embarrassed and ashamed in my life. My friends did this nice thing for me and I couldn't even do it so they couldn't do it either.

Sadly, this happens everywhere I go and I see it happen to others as well. The previous day, at the amusement park, I discovered waiting in line was not going to be feasible. We were set to buy those passes that let you skip the lines but they had none available. Luckily, the lady there offered to give me disability access, which is basically the same thing. Embarrassing but I was grateful she didn't make me feel bad.

The same couldn't be said for one of the employees I went up to in order to get my time to ride a ride as instructed.

Taking one look at me and then my friends, he must have determined we were "not really disabled". He lied to me, forcing me to walk back to another ride because I supposedly could not have a time for two rides at once.

The next ride, we were told that was an outright lie. Awesome. Made me feel great.

By the time we made it to the next day's trial at Water Country, I felt lower than I have since I got this replacement. But honestly, it's not their fault. Not really. This happens everywhere, because nobody understands. And because they don't understand, they don't care.

Isn't that one of the many unfortunate things 2020 taught us?

It doesn't matter whether your disability is chronic pain or if you have an illness many see as "easy" like diabetes. People judge, they make you feel like you stick out, like you're less than. I used to work at a movie theater and a man actually had the audacity to say to me “Wow, real nice that you get to sit down while everyone else has to stand” in the most self-righteous, judgmental tone I’ve ever heard. All because I had a doctor’s note to be allowed to have a chair while I worked. I can’t even imagine seeing someone who is obviously receiving an accommodation and making a comment like that.

I've lost count of the number of times people stare at my scar as I walk by. Wearing pants is iffy for me, as my knee is continuously in a state of swelling that can make it feel like it's caught in a vise. I'm not the first person in the world to have a scar but it sure feels like it sometimes. Nobody bothers to look away, they don't stop those in their family from staring, they do nothing.

The stigma around disability, much like with mental health, makes people feel like they can't talk about it. Like if you don't bring it up then whatever it is will just go away. I can assure you, if I "complained" about my pain as often as it happens, I would only ever talk about that rather than the few times I actually do bring it up. (Usually when it is so bad I can't think of anything else, like now, which is why I am writing this all out)

When did we adopt this mindset that others don't deserve our compassion if we can't readily identify what's going on with them? Countless people suffer from invisible ailments every day. Those with cancer struggle and everyone empathizes....on paper. If they can't tell you have it, though, you're subject to scrutiny. Embarrassment. Judgement.

Being faced with uncomfortable situations or vulnerability seems to be something a large amount of society rejects.

I am not perfect. I try to hold doors for those using a cane or in a wheelchair because I remember how humiliating it was when I was in their shoes and nobody helped me despite my obvious struggle. I try, but I know I mess up. I get impatient. I let the irritation of either my pain or my anxiety push me to move just that much faster so I don't have to wait. I try, but I also have to make a conscious effort to do so most of the time. As if waiting that extra five seconds will bring me face to face with all my demons and my trauma.

As if it will remind me of what I struggle with, remind me that I could fall back into that hole so so easily.

I went through a lot of mental health issues that stemmed (either directly or indirectly) from my pain. I battled addiction -something I will discuss in a future article- along with a host of new anxiety complications. Yet, I'm still here. I'm still trying. I'm not giving up.

But I have to make that choice every day.

Maybe if more people talked about it, maybe if we all took that extra five minutes to help that person who is moving just a bit slower than we'd like, the stigma would disappear. It wouldn't feel like a shameful confession to talk about and we wouldn't have to stare-while-pretending-we're-not.

Disabled is not a dirty word indeed.

*****

Disclaimer: This is my own personal experiences. I know everyone is different, I also know not everyone judges the way I’ve experienced. I do not intend offense! This is merely from my own experience and feelings and thoughts. All the love to those also disabled like me!