illness

I Have a Rare Incurable Disorder And No One Really Gets It

doctor office

Have you ever had an illness that just wouldn’t seem to go away? Like an ongoing cough or persistent nausea? If you have, you’ve probably had people say to you, “You’re still sick?!? We need to get you healthy!” And then they shoot off a laundry list of things YOU need to be doing better.

Welcome to the last 18 months of my life.

I have an incurable disorder (not disease) called dysautonomia. Essentially, my nervous system is fried and my brain is telling my body to respond to things that just aren’t happening. Dysautonomia is a dysfunction of the autonomic system, and let me just tell you, it is totally dysfunctional.

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It all started on my 33rd birthday when I had the norovirus (read: really awful stomach bug that ruined my life). While my husband recovered in about two days, I didn’t. My symptoms persisted. Nausea. Vomiting. Dizziness. Exhaustion. The whole gamut. I went to urgent care after about a week and was told I had labrynthitis and was prescribed a heavy-duty steroid and an antibiotic. When that ran out, I went to see my brother (who happens to be a doctor) and he thought I had vertigo—so he referred me to an ENT.

In the course of six months I saw a gastroenterologist, who ran so many tests I thought my insurance was going to kick me to the curb. I was assured my gallbladder was causing the problem, so that was removed. When that didn’t seem to make my debilitating nausea go away, I was prescribed an anti-emetic to help me keep food down. I was also told by many doctors that it was anxiety. I had a therapist tell me to quit my job because it was stressing me out. Apparently, this is a normal “diagnosis” for dysautonomia patients.

Then my mom was hospitalized for end-stage Lung Cancer and she passed away. While she was in the hospital, my symptoms got worse. The day she passed away, my uncle told me to go home because I was lying on a couch turning green. I went home and couldn’t rest. My body kept telling me to go back. So, I mustered up all of my energy and went back to the hospital. I’m glad I did because she passed away 15 minutes after I returned.

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Through the shiva process my symptoms got worse. I could no longer keep food down, much less look at it or smell it. The smell of the latkes my aunt made turned my face green, and I had to run for a bathroom immediately. During this process my dad happened to watch a morning show and heard of a site called Crowd Med, where people crowd source their symptoms. I signed up thinking “what do I have to lose?” I mean, I was already missing a lot of work because I couldn’t drive to downtown Detroit thanks to the dizziness and nausea. The majority of the symptoms I described fit the diagnosis of dysautonomia.

While my primary care physician didn’t think I fit the cardiac criteria for dysautonomia, she recommended I see my neurologist and got me in to see one of the best cardiologists in Michigan. They all assured me that I likely fit the bill of having this awful disorder, but I needed to have more testing done first.

I was diagnosed at the end of April 2015. At one point, I was on 20 different medications. I was prescribed yet another pill that helped control my dysautonomia in ways I’ve never seen—it was an antidepressant. It made me gain 30 pounds in four weeks. And that made me depressed. Vicious cycle, I know.

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By this point, the nausea, acid reflux, vomiting, stomach spasms, and breathing issues are enough to make anyone want to jump off a cliff. To make matters worse, I find very little sympathy from the people around me. I see judgmental looks when I walk around in yoga pants (they are really compression pants). And the comments I receive from friends while enduring this range from, “You’re making yourself sick,” to, “Maybe you should go paleo,” and, “I think this is all in your head.” When you’re already feeling low, this makes you want to crawl into a hole and cease functioning.

There are things I’ve done to make my life more manageable. I take breaks when I need to. I put my feet up a lot in order to get the blood to go back to my heart. I drink a lot of Gatorade and electrolyte fluids. I also try to eat properly when I can eat. I use essential oils for my nausea and gastric discomfort but if those fail, I head straight for my meds. I also try to wear compression stockings or socks when I can, but sometimes they are so uncomfortable it’s not worth it.

My body hurts a lot. I get random migraines. I often look like I’m pregnant. I feel depressed and undesirable because of how I look and feel. Interacting with my kids is hard because I’m not always functional. But there are other people who have it worse than I do—they aren’t functional at all.

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October was dysautonomia awareness month, and I had every intention of writing this article then, but having dysautonomia can leave you sidelined for days-on-end when a flare hits. But this disorder deserves awareness every day, anyway—millions of people suffer from this all over the world and many are brushed off by doctors as having Munchausen’s or some other form of mental disorder. We’re treated poorly by emergency room doctors because they don’t know what dysautonomia is and just think we’re pill-poppers. Personally, I’d rather be in pain than have to visit my local ER because I’ve seen this treatment first-hand. Social Security doesn’t always see dysautonomia as a real disorder that causes disability but, let me tell you, when you live with this every day you wonder how someone could ever believe that.

There are resources available to help those of us with this, but there’s not enough funding to help find better treatments or even a cure. So, for now, we’ll continue to raise awareness, and I’ll continue to be BFFs with Gatorade.

The opinions expressed here are the personal views of the author. Comments are moderated, so use your inside voices, keep your hands to yourself, and no, we're not interested in herbal supplements.

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