4 Reasons Why Going to the Doctor While Disabled is a Gamble For Me

Most folks see no harm in going to the doctor. But for someone with multiple, rare diseases, going to the doctor can be risky.

I Should (and Should Not) Go to the Doctor

It's 4:49 in the morning as I start this spontaneous post. I'm in so much discomfort that I can't sleep. I have a fever, sore throat, itchy and hot skin. All of my joints are swollen and feel "rheumy". I've a headache, my eyes feel hot, and my skin randomly has welts when I rub or even gently scratch it. My lymph nodes in my neck and underarm are sore. I have a scratchy cough and bouts of lightheadedness.

I should go to the doctor, right? Yes, but also sometimes no. Let me explain.

1. I'm Medically Complex

I have multiple rare diseases. Just some of my diagnoses include Spina Bifida, Tethered Cord Syndrome, Ehlers-Danlos Syndrome, Gastroparesis, and Behçet's Disease. I travel 2 hours to see my specialists at a large teaching and research hospital. Most doctors in my area have released me as their patient due to my complexity.

2. My Insurance Sucks

As I'm self-employed, my health insurance is through the Marketplace. These plans are great for healthy folks; they are not the best for disabled folks. Lots of providers don't take them and deductibles are often very high for the affordable plans.

3. My Immune System Also Sucks

I'm immunocompromised. Behçet's Disease is an autoimmune/autoinflammatory form of vasculitis. It's also extremely rare in the US.

4. Medication Complications Love Me

I have multiple medications that are contraindicated for me. I'm allergic to 3 antibiotics, I can't take another class due to my connective tissue disorder. I can't take steroids, NSAIDS, or extended-release pills due to gastrointestinal surgery I've had. I can't take anything that affects norepinephrine due to the rarer form of dysautonomia I have, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.

Damned if I Do and Don't

That's the dilemma I face every time I feel sick. If I seek treatment , there's a large chance I'll be written off as a hypochondriac, receive no care at all due to my complexity, receive dangerous care by ill informed practitioners... or worse, I'll end up with Dr. Fragile Ego who doesn't like knowledgeable and persistent patients who advocate for safe care. (When I say "sick", I mean everything other than my diseases and conditions daily effects on me.)

I'll go to the walk-in clinic later today after I can hopefully get some sleep. Thankfully, working for myself means I can step away as needed and prioritize my health... something that's been impossible at most other jobs.

Leadership folks: prioritize the health and wellness of your employees. Stop the cycle of shame and guilt surrounding taking care of ourselves. Until AI robots replace us, treat us as humans.

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    A white MRI machine within a mostly white room at the hospital. The text reads: "Going to the Dr: a gamble for me. Bela Gaytán dot com".

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