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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 ‚Äúnormal‚ÄĚ 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, ‚ÄúWhat the heck is that? I’ve never heard of it¬†before.‚ÄĚ 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 ‚ÄĒ letting people watch my heart rate climb 40 bpm or more when I¬†stand ‚ÄĒ 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‚Ä≥) 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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