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  • Writer's pictureMargreta

5 Remarkable Lessons My Autoimmune Condition Has Taught Me [Part 1]

Updated: Aug 20, 2020

{This is part 1 of a series, to be notified when the remainder of articles post, sign up for our newsletter HERE.}

Can’t say I’m surprised that my autoimmune condition decided to flare this year. And to be honest, I’ve been expecting it since March 19th when the gym where I train Pilates Reformer clients shut down due to the coronavirus pandemic. I’ve expected every morning to wake up with a telltale sign that it was imminent.

It's been almost two years since my last major flare up and before that, it had been at least 2-4 years. According to the receptionist at the doctor’s office, I hadn’t filled the necessary prescriptions since 2009. Which I knew wasn’t true as I was holding a bottle of the meds and they had only expired in November 2019.

I won’t bore you with the details and the many ways my autoimmune condition can affect me and honestly, they aren’t pretty anyway. I will share with you over the next few posts the various lessons I've learned along the way and hopefully help you see your chronic condition differently.

But first, let's get to know each other a little better...

For the majority of my adult life, I have grappled with managing this condition. And for nearly a decade I didn't even know it was an autoimmune condition due to the way I was treated by medical professionals. It was incredibly demoralizing, I was made to feel like it was all in my head, that I’d brought it all on myself and it wasn’t a real condition.

I ended up in the ER twice within 5-7 days and lucked out to have the same attending physician. This physician had done her residency under someone who researched rare autoimmune conditions.

She knew based on the details I’d shared with her that I fell into this category, and while I was sleeping overnight on the painkillers they had administered, she did some research and when they were releasing me the following morning, she not only gave me a name of the condition but a local doctor who specialized in rare autoimmune conditions.

It’s not like I was magically cured that day, in fact, I was out of work for about a week or more and it took weeks to return to normal. But the relief of validation is something that unless you’ve experienced the medical community discriminating against you because they are taught biases by the very nature of their education, it’s nearly impossible to comprehend and truly empathize.

Eventually, when I saw the rheumatologist the ER physician recommended, she gave me the best advice: do your research. She told me my condition is so rare (1 in 200,000) that it is unlikely medical professionals have heard of it, let alone will ever treat someone.

By the time my doc retired, she had helped me take control over my own health & given me the confidence to combat my interactions with medical professionals who dismiss me and my chronic condition. I’m grateful to her for empowering me. It's a skill I pass on to my clients, empowering them to take back control from their diagnosis whether autoimmune of heart disease, cancer, or neurological.

I took her advice and researched the crap out of my condition. I learned a lot about my condition and how it was treated all over the world. In some countries, this condition is much more common and so there was a wealth of information I would translate from various languages into rough English.

In the next post, I’ll share what I learned, what I took away from my own research, and how I began to heal physically and mentally.

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