“But you don’t look sick”

Hi. My name is Alaina, I’m 25 years old, and I have a chronic illness.

But I don’t look sick.

On the outside, I look like any average 25 year old. I have tattoos, I color my hair, I always have my phone in my hand, and I follow all the makeup trends. I do everything I can to appear “normal.”

But on the inside, I feel 75. I have Ehlers Danlos Syndrome. I know what you’re thinking “Ehl…uhle… eh-what?” I still struggle to pronounce it myself, and I was diagnosed back in 2011. Ehlers Danlos Syndrome is a group of genetic disorders that affect the collagen and connective tissues in the body. For me, this means my joints like to dislocate and hyperextend pretty much whenever they feel like. I’m a real life elastigirl, except it’s not fun and it hurts. But hey, at least my skins really soft and my tattoos stay vibrant.

But that’s not all. Collagen is in almost everything in your body so it doesn’t just end with my joints. I also am Factor VII Deficient, which is a form of hemophilia. I have Polycystic Ovarian Syndrome. Postural Orthostatic Tachycardia Syndrome. Arthritis. All sorts of stomach issues. Oh, and don’t forget anxiety and depression.

But I don’t look sick.

What you don’t see is the chronic fatigue, the pep talks I give myself before performing simple tasks, the upset stomachs, the panic attacks that come along with every snap crackle or pop that my body makes, the fears and emotional baggage that comes along with an invisible illness, or the muscle spasms after every dislocation gets put back in place. The list goes on, but I’ll save those for future posts.

Thankfully, what you do see is my constant fight to love life and be brave. Some days I’m actually okay, some I’m just really good at faking it. And some days I wonder, why do I feel the need to fake it? Why is it so hard to just say “I’m not okay.” Why are we so afraid to share our problems? Why do we feel like being vulnerable is a sign of weakness? Why do we feel as if sharing our stories will only lead to judgement and isolation, instead of thinking that maybe someone else feels the way we do? What if by sharing our fears and struggles, we could help someone get through theirs?

I know I’m not in this alone, I want you to know that you aren’t either.

I’m a daily warrior and I’m here to share my story.

Be brave princess,

You got this.

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The Journey Begins

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

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