Why I'm Grateful My Invisible Illnesses Have Made Me a Fighter


As many of you know, October is Dysautonomia Awareness Month. Because of my Ehlers-Danlos syndrome, I also struggle with dysautonomia. The two conditions are correlated, and though there are several theories about why that is, it doesn’t really matter. What matters is that my heart likes to go to the races, with little to no warning for me. If the chest pain is too bad I have to go to the hospital, in case it’s not my dysautonomia but instead pain in my aorta due to Ehlers-Danlos syndrome. It is incredibly hard to live with two conditions that people can’t see unless I’m in a brace or a cast or have fainted on the ground. I would give anything for a day without being sick, but that is not the hand I was dealt to play. I believe in making the best out of things though, so there are several things I am thankful to these conditions for giving me.

Because both conditions are categorized as invisible illnesses, people usually don’t know I’m sick until I’m in trouble. This can be a good thing as I can sometimes blend in among “normal” people. I have also had to become my own self-advocate. Only I know when my heart is going haywire or when I’m over-heated or when my brain fog is bad. I used to hate asking for help, but now I know I have to sometimes. I have to ask a classmate for help if I need something repeated. I also have to ask strangers for help if I’m alone in public having a problem. Most people are willing to help, if they actually know what is going on and what you need from them.

Most doctors cannot spell either condition, so I am always taken by surprised when they know what each condition is. Unfortunately, I’ve done a tour of about every local hospital and one international one. I am always pleasantly surprised when a physician knows about either condition. It also means sometimes I have to fight for what I need. I need to be an advocate for my own health when a physician doesn’t know how to treat me. Usually, one or two bags of saline do the trick, but they need to know that from me.

When I tell people what I have there are a couple of responses. The usual one is, “What the heck is that? I’ve never heard of it before.” The worst response was someone telling me dysautonomia wasn’t even a real word, let alone a condition. I asked them how many medical terms aren’t recognized as words in the dictionary (it is quite a few, by the way). I have to educate people about my conditions, so hopefully they aren’t as ignorant in the future.

Most people think the party tricks associated with Ehlers-Danlos syndrome are cool. The only party trick of dysautonomia — letting people watch my heart rate climb 40 bpm or more when I stand — tends to make me faint, so I avoid it. I carry around both the Dysautonomia International and Ehlers-Danlos National Foundation pamphlets to give out to curious people. I’m not afraid to share about my conditions because there is no better advocate than someone who is experiencing it every day.

I have also developed an awesome sense of humor about what I go through. If I wasn’t laughing about my situation, I would be throwing myself a pity party. My dating life is non-existent; the most action I get is when a male certified nursing assistant does my EKG. Sometimes the doctors don’t actually think I’m in that much pain because I’m cracking jokes (and there are many to make with each condition). I try to find the humor in the situation no matter what. Just before my last surgery I wore a superhero onesie (I’m 6’3″) and had every nurse in pro-op laughing with me. Only the doctor made me change.

When I became sick, I thought there were things I would be incapable of doing, but I am a much stronger person because of these conditions. I endure daily subluxations without blinking. Once someone asked me if my knee was supposed to look like that, as it was dislocated slightly off to the side. I just popped it back in and thanked them for letting me know it was out. Their jaw was on the floor but I just walked away because it’s my normal. I also underwent a procedure where the local anesthetic didn’t work and I felt every single move and incision the doctors made. They didn’t sedate me at all. I cried, but I pulled through. I’ve become a pro at swallowing massive nasogastric tubes and can look at a needle without passing out (I used to faint at needles as a kiddo). I have endured so much, but I don’t let it get me down.

Finally, I have become a true fighter. I fight for proper medical treatment. I fight to reach my goals and aspirations. I fight to hold down a job. Every day is a battle between what my body is capable of and what my mind wants me to do. I fight for balance between these two forces to live the most phenomenal and fantastic life possible.

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