Gina Florio
January 28, 2016 7:48 am

I lived a quarter of a century without knowing that I had scoliosis. Nearly every day I walked around with some sort of back or neck pain, and every month I would wake up with such sharp pain in my cervical spine that I couldn’t turn my head in any direction without being driven to tears. (I would later learn that particular agony was called nerve pain.)

It took a decade of visiting one medical professional after another, explaining my discomfort in detail, taking all different kinds of painkillers, before I finally found a chiropractor who was willing to take x-rays — and, more importantly, take my pain seriously. Since then, life has gotten a bit easier. With the proper treatments I’m able to do things I couldn’t do before. But I still live with the agony of an invisible disability, and it hinders me from living a completely “normal” life, as society likes to call it.

Invisible disabilities aren’t fun things to talk about, but there are millions of young Americans living with them. We share a lot of the same experiences, as well as the same thoughts from time to time. Here are just a few that cross my mind pretty often, and I’m sure they’ve popped up among those individuals with conditions similar to my scoliosis.

Everyone thinks I’m faking it

I’m plagued with this thought often, and I mean often, about 7-10 times a minute. On the outside, I look completely normal. I teach yoga and walk places and can bake a perfect chocolate cake, but throughout most of these activities, I am harboring some sort of discomfort in my lower spine. Or my neck. Or my shoulders. There’s always something.

But when I try to explain this to others, there’s usually a skeptical look on their face. Their wheels are turning in an attempt to understand what I mean when I say “chronic pain.” It’s difficult for them to fully grasp the concept when all they’ve known is physical mobility that comes with the greatest of ease. I know this doubt doesn’t come from a cruel place; it’s not like they’re accusing me of being a liar. That doesn’t make it any easier, though. I sometimes want to shake them by the shoulders and make them believe that I’m hurting. 

What will my body be like in 10 years?

If it’s this bad now, the likelihood that I will be completely hunched over in another decade or two is pretty high. At least, that’s what I tell myself on a regular basis. How can I believe anything else after hearing from a chiropractor that the x-ray of my neck resembles that of a 65-year-old?

This fear is common among the younger population living with chronic pain. We are constantly presented with an image of what elderly people look like, what they suffer with, and we can’t help but predict that we’ll be in even worse shape when we reach that age. Those of you who have perfectly functioning bodies hardly ever get slammed with negative thoughts like that. 

I wish I could do that

Every time I pick up a fitness magazine or scroll through health-related websites, I look at the pictures of athletes doing these incredible things and immediately think about how broken my body is. Even the simplest movements that are considered beginner level just aren’t an option for me because they may result in aches and pains.

When you have a disability, it’s hard not to focus on the things that you can’t do, especially when people your age and demographic seem to do it so easily. Sure, it’s not the healthiest way of thinking, but it’s what we’re left to deal with on a regular basis. For example, in yoga, I see beginners next to me doing a perfectly simple twist, one that I’ve had to work at for years. It’s not the best feeling in the world, trust me. 

Nobody gets what I’m going through

Hardly any surrounding peers suffer through the same things as us, and there are very few public figures in our demographic who speak up boldly about similar experiences. It’s easy to feel like we’re completely alone in this struggle, and totally misunderstood. Even when we explicitly explain to others what it is we’re going through, it seems to fall on deaf ears.

I’ve even had partners in the past who couldn’t understand why it was hard for me to get a good night’s sleep. Instead of listening to my reasons and trying to see where I was coming from, they would just brush it off and chalk it up to my being dramatic.

If you’re in my boat, and this rings true with you, remember that there are always people out there who get it. You just have to look in the right places to find them. There are more individuals talking about it in the online community, and that’s a great place to start exploring. You might find that entering these conversations gives you more hope about your condition than you ever imagined.

Maybe I should talk about it less

Honestly, I think people get really uncomfortable hearing about invisible disabilities and chronic pain among young adults. In a way, I get it. It’s not a very pleasant topic. For example, it can be a real buzzkill at a party when you mention the recent pain you’ve been dealing with and the latest treatment you’ve tried out. This has transpired so many times that I’ve considered just keeping my mouth shut instead.

We see this happen with every marginalized group. We all go through this debilitating phase where we are convinced that we should remain quiet, and not rock the boat. We’re learning more and more, though, that this is not the answer. Silence will get us nowhere. So, let’s talk about it!

(Image via iStock)

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