I don't talk about this in detail a lot, and I often scold my mother for sharing my medical information with anyone, but no one else really does either. So in honor of Invisible Illness Week and Dysautonomia Awareness Month, here ya go.

After years of confusion and wrong diagnoses, I was finally diagnosed with Ehlers Danlos Syndrome Type III-H, with dysautonomia (POTS), a possible mast cell irregularity and possible vascular complications in May of 2015. I also have a random 4mm lipoma (fatty tumor) in my brain that does literally nothing, found in December of 2015. "What do you mean "possible"?" is a question my dad used to ask. I have signs and symptoms that can't really be matched up to anything just yet because they change on a whim. Which while fascinating to physicians, is a real pain in the butt for me.

For those of you who are wondering, Ehlers Danlos is a connective tissue disorder that can affect many things, and there are many kinds. I happen to have the hypermobile form where my joints and muscles can do all kinds of movements. My blood pressure also goes willy nilly causing black outs or dizzy spells, but I've gotten really good at sensing a spell and stopping it before losing consciousness. I commonly experience fatigue and find it more annoying than anything else, especially when I have things to do. It's quite inconvenient, but so are lots of things in life. Occasionally I end up with mysterious bruises all over my shins, that's probably part of the possible mast cell irregularity, but they really don't do much more than make me look clumsy. The lipoma literally does nothing but sit there, but he's a part of me, so of course he had to become part of the family. His name is Sebastian and no one really pays him any attention except once a year at the yearly brain scan. We've paid him two visits so far, and he's still doing absolutely nothing. The vascular part of things is the most annoying, sometimes I bleed a lot and get woozy and sometimes I don't, sometimes my resting heart rate is 130+ for no reason and sometimes it's chilling at 85. Sometimes all of my blood vessels constrict just because they feel like or on the flip side, they diolate; we just have to roll with it. That's really all you can do with EDS. Which honestly has been an adjustment for my family, we can be control freaks, but we have 0% control over the EDS.

In the beginning we tried to figure everything out, and desperately wanted answers and names for every symptom. In the beginning we wished I had a normal childhood, free of surgeries, needles, tests, scans, methotrexate, sulfa drugs, and medical trauma induced anxiety. In the beginning we tried to sugar coat things and pretend it would all be fine. In the beginning, we attempted to ignore the impact this would have on our lives. We didn't talk about the scary parts nearly as much as we needed to. We wanted control. We tried to hide this from the world, and leave it behind closed doors. We wanted "normal".

Now those are things we've learned to embrace. Those are the things that have made me. We still aren't happy about it. We still wish the hard parts weren't so hard, but we know we can handle it. Our family conversations probably entail more medical jargon than the average family. Our normal is definitely a bit different than yours, but I'd like to argue that's just a product of my parents both being a little wacky. We probably have a closer relationship with my specialist than most people do, but the man is the coolest God-sent gift. Name another doctor who is double-specialized, lets you text him random questions, rocks cowboy boots, comes into your IV infusion just to hang out and see how life is, and owns a bookstore on the side. Dr. B is pretty spectacular.

The questions I get asked the most are, "How do you do it?" and "What's it like?'. To be honest, I've never known anything else. This whole process started with scoliosis and a back brace when I was eight. I've never had the option to not do it. We just kind of decided to make the most of it. Anyone who knows me, knows I'm stubborn as heck. I'll just bulldoze over anything that's in-between me and success. Daddy "didn't raise no quitter."

Obviously, my life isn't "normal." On average I see a doctor at least once a month, but we're trying to cut down on that. We set realistic goals, wipe every surface we can, and make sure we get flu shots. I'm definitely very attached to my nurses, and may or may not be a little crabby when they aren't around, but even the best of the best need a break. (Yes, I'm talking about you, Nurse Megan and Nurse Patti). My best pals may receive snapchats of my displeasure in their absence, as seen below.

But overall my life is pretty stellar. I have quite possibly the sweetest doctors and nurses doing everything they can to make my life as amazing as it is. While scheduling doctors appointments and tests around a hectic college schedule can be a hassle, I never mind getting to visit them.

To be clear, I have never once been a victim. My disease does not define me. I am in no way limited. I may not do things the way you can, but I can do anything anyone else can. If anything, I have an advantage over most people. I've had to fight a little harder to do things, learn to persevere and endure, and problem solve in a way most kids my age haven't gotten to yet. Having a strong faith helps me do that. It's pretty cool to think that the same God who created the universe and knows every single star by name decided that I got to be made a little extra special.

If there's anything you take away from this, let it be this: embrace your chaos. Everyone has something whether it be medical, mental, circumstantial, whatever. Don't let it define you. Instead, embrace it and own it.

"a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from being conceited. Three times I pleaded with the Lord about this, that is should leave me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." (2 Corinthians 12:7b-10)