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Managing a Chronic Disease Without Health Insurance

By: Joe S., Clay County

Chronic health conditions develop over time. It started in 2014 when I began having dizzy spells. They didn’t last long, just a few seconds after I blew my nose or got out of bed in the morning. I was living in Austin, TX then; the city is well known for being difficult for allergy sufferers. After a few months, the dizzy spells were lasting a few minutes. I believe that’s when my disease first began, but I did not know this at the time.

I moved to Florida in early 2016 (mostly for health reasons) and was able to sign up for insurance through the Marketplace. I had a good plan through Florida Blue--not a top-of-the-line plan but it kept my expenses under control. My premium was less than $20 a month which was very affordable for me, working as a freelance illustrator...but work was becoming challenging due to my symptoms. In 2017 I was visiting my primary care doctor and told him about it. He referred me to an Ear, Nose and Throat (ENT) specialist. That's when I got my diagnosis: Ménière's disease. It is a condition of the inner ears that causes severe head pain and dizziness. It's also incurable; symptoms will get progressively worse over time. It's likely that I will eventually lose my hearing entirely.

I spent the rest of the year trying to figure out how to deal with it; part of that process involved falling four or five times. My motorcycle was my primary mode of transportation at the time, and I had to give it up. I sold it for a pittance after the ENT told me, straight up, that a bicycle would be fine, but I could no longer operate any two-wheeled vehicle with a motor. A few months after my diagnosis my health insurance premium jumped to over $550 a month, out of the blue. No one from the company or Marketplace called me to explain why. This happened after the election, so I figured the new President was making good on his promise to change the Affordable Care Act. I could not afford the premium, so I let the plan go. What else could I do?

Since then, I have not had access to regular medical care. Sometimes I buy OTC medications to mitigate my symptoms. Ménière's disease is untreatable, and all that can be done is controlling symptoms as much as possible. There are medications you can take to reduce vertigo, in theory. The medication that worked the best must come from a compound pharmacy and is very expensive. Even when I had health insurance it didn't cover that particular medication, so I paid full price--and it was steep. Other prescription medications can be helpful, but I can’t buy those right now. The disease has drastically lowered my quality of life. One thing I’ve learned: A chronic disease is something you must reckon with.There is life before the diagnosis, and life after. It becomes the dividing point in one's history, like B.C & A.D. I can see now that my Ménière's disease slowly showed up in my life; the diagnosis just confirmed it.

Life got challenging after that. I’ve had to make several changes in my day-to-day existence. Some days I’m not able to work due to headache, dizziness & ringing in the ears. Diet is a big factor in controlling Ménière's symptoms, so I’m careful with caffeine and sodium intake. I try to stay physically active because I know that sitting around only increases progression of the disease. If my dizziness is not too bad, I make sure to go outside. Technology has really helped me make connections to other people with chronic illnesses. There are lots of support groups on social media where people share how they’re feeling and how they are dealing with chronic health issues. People are trying to be there for each other. It helps, because chronic illness can be extremely depressing. A chronic illness gives you a sense of limitation--there are only so many things you can do.

The fishing and boating scene is big in Florida. I have some woodworking skills, and a while back I got the idea to build a small boat, maybe a daysailer of some kind. But, if you’ve got balance issues it’s never a good idea to be where the floor constantly moves under your feet. If the boat capsized and seawater got inside my inner ears, I don't know exactly what the consequences would be...but I do know they would be very painful, perhaps dangerous, and expensive to fix, if they could be fixed at all. So boating is one thing I’ll never be able to do. With any chronic condition that you get, changes are inevitable. The only difference is how much and in what way(s) your life will have to change.

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