Chronic Illness & Spoonie Stuff

When my doctors don’t listen to my pain.

Before I was diagnosed with type 1 diabetes at age 10, I had been sick for months. Not eating, downing gallons of water and soda every day, lethargic, sleeping as much as possible, peeing every 30 minutes. In the last month before diagnosis, as I rapidly lost 30 pounds (on a 5’2″ frame), multiple doctors told my mom I was doing this on purpose – losing weight on purpose – to better fit in with my new classmates. I actually had an incurable autoimmune disease but, because I was a preteen girl, multiple doctors assumed I had an eating disorder. When I was finally diagnosed – by a nurse, as I was carried into the emergency room at 4am on Thanksgiving morning – I was likely less than hours from a permanent coma or death from severe diabetic ketoacidosis.

When I broke my ankle in 3 places while hiking when I was 26, I called 911 from the trail. I told them my ankle was broken (it was visibly broken – bone at odd angles and everything). They kept on insisting it was sprained. They took an hour to find me on the trail. When the EMTs walked up – and I mean SLOWLY walked up – as soon as they saw my ankle they sprang into action. “OH SHIT. Shit. We should’ve brought you pain meds. We didn’t bring the stretcher down with us. Can you hop?” Three places. My ankle was broken in three places. And I told them that. And they didn’t listen.

Over the last few years, as I’ve dealt with massive bouts of chronic pain, insomnia, depression, anxiety, numbing fatigue, brain fog, etc., multiple doctors – and short term disability insurance – kept saying they didn’t think anything was wrong. It wasn’t until last year, after three years of tests, that they finally did the tests to determine that – for reasons still unknown – my immune system is constantly fighting my body and my muscle fibers are constantly breaking down. So of course I’m in pain. Of course I’m exhausted. Blood tests – that took three years to order – show that it’s not just in my head, even if we don’t have a solid diagnosis.

About four years ago, I went to a gastroenterologist to explain that I had been running elimination experiments on myself and was fairly certain I had issues with dairy and/or gluten. He walked into the office, literally looked at me and sighed, and said I just needed to lose weight. I explained that I thought it was the other way around – that, now that I had started eliminating these things my body wasn’t taking well to, I was starting to lose weight, and I thought it was the issues with the food that had made me gain so much so quickly. Again, he said that I needed to lose weight and that it was probably my “out of control blood sugars” (that were not out of control). Years later, through blood tests, I’ve found out that I’m intolerant or allergic to all of the things I suspected and then some. After about two years of eliminating them and SIGNIFICANTLY supplementing my nutrition, I’ve lost 40 pounds. I was right, but he tried to shame me.

I watched the video below in tears out of pure anger and frustration. I hate that we’re not listened to. I hate that this is so common. I hate that, literally every time I go to a doctor for another reason, they blame my type 1 diabetes (that I’ve had for almost 20 years – I know when something is my T1D and when it’s not).

I hate that I have so many more instances of bronchitis that people thought were colds, of SEVERE strep throat (my throat almost closed on itself) that a doc sent me home with Advil for, of hairline fractures that docs said were sprains, of salmonella poisoning that a doc thought was high blood sugar (even though my blood sugar was 100 at the time, which he saw), etc., etc., etc.

It’s infuriating and the only thing we can really do is continue to be our own loud advocates.


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