different shoes

You Don't Know What It's Like to Live with AS

You don’t know what it’s like to be me. The story of every single person with a chronic illness. We live lives that are so complex, even we don’t always understand them. Why do I hurt? What is going on with my back? Is my knee supposed to bend that direction?

We don’t know ourselves that well, so that means, without a shadow of a doubt, other people don’t know what it’s like to live with chronic pain and illness. Not even people with the same condition. Everyone is different and everyone’s diseases manifest in a different way.

Everyone is different

I know people with ankylosing spondylitis who can touch their toes, but require a wheelchair to go anywhere. I, on the other hand, can barely touch my knees, but I do pretty good walking for longer periods of time. Am I any different from my friend? Is my pain different? How about my will to keep going?

The answer is...there is no answer! And there never will be one. Simply because we have no idea what it’s like to be another person. We can guess and we can rely on our experience. But, until we actually inhabit another body, there is no answer.

Wait! I have an answer!

No, no you don’t. You might think you do, but your experience does not translate into my experience.

"You’re too young to feel like this"

“You need to go gluten-free. My grandmother with RA tried that, and now she can knit!”

Um...no!

Believe me, I am happy for your grandmother. But, I am not your grandmother. And don't tell me because I am young and she is 86 what works for her, will work for me. Sadly, it will not, no matter our age difference.

“You're too young to feel this way” is one of the worst reasons out there for someone to not feel the way they do. Mainly because many of us believe it to be true. We are raised with this belief that age is the sole reason for our bodies to break down. If we are over a certain age, it is expected that we will have physical limitations.

Age is just a number

On the disabled parking permit application. If you are 75 or older, you don’t need a doctor’s note. This exercise DVD I tried was for people 55 and older. (Then they added “or people with limited mobility” after the fact.) And, then there is the fun of signing up for water aerobics and being the only 30-year-old in a pool of 65+.

Based on these examples, yes, we are too old to feel this way. But, we know this is not the case, and let’s remember there are some pretty amazing “old” people out there. Like the 75-year-old man who is still running marathons. Or, that woman whom I believe is 66 and still practices karate. Why doesn't everyone say “You're too old to act that way!”

Simple reason. We are believers that age is just a number, and it’s the person’s ability that matters, not their age. So, let’s stop telling people they are too young.

"You need to try this"

“My back hurt too, until I added more iron into my diet.”

Or...

“I had trouble sleeping, until I started taking this supplement.”

(Substitute in any suggestion here that works for you.)

Let me state here that I know there are plenty of suggestions out there that will work for you. But, I should point out, I'm talking about YOU. Not everyone. I'm no scientist, but I do believe that genetics plays a bit of a role in someone’s physical abilities. Ankylosing spondylitis is genetic, so is heart disease, certain forms of cancer, and.. well.. pretty much every medical condition out there short of butterfingers, and that simply hasn't been tested yet.

So, if medical conditions are genetic, why can’t treatments be as well?

There are 8 biologic treatments for AS currently on the market. And, ask any support group, a patient will have success with maybe 1 or 2 of them. This is because “biologics” work with different gene types. People who are HLA-B27+ tend to do better with TNF blockers. While people who are HLA-B27- find more success with IL-17 inhibitors. But, even this system isn’t 100% foolproof. Because what works for one person might not work for another.

The human body is a complex creation of nature and nurture. The idea that with all the factors that go into building who we are that the same medication, supplement, or diet will work is a trillion to one shot.

"You're just not trying hard enough"

How do you know? Do you watch me from the time I wake up to the time I go to bed? Because if you are, get out of my house! All kidding aside. The only one who knows the level of effort you put into something is yourself. And, not everything is visible. When I get out of my car parked in a disabled parking space you see me stand up and walk away.

What you don’t see is the effort I put into swinging my legs around, positioning my body, finding the strength to stand up and then how tight I need to clench my muscles to stay upright and walk. And, even on the days that I don’t have to work as hard, you also don’t see the thoughts in my head that after this shopping trip, I might not have enough energy to walk back across the parking lot.

The thought process that goes into our day to day alone is exhausting. We don’t know what kind of day we are going to have, so we must do our best to prepare.

"If only you could..."

If only you could walk a day in my shoes. You’d have a better understanding of the pain, exhaustion, and fog that I and my AS brothers, sisters, and non-binary siblings, live with every day.

At least, I think they live with this every day.

Maybe it’s just me.

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