Do-re-mi-eds-pots-mcad-ocd medical dic-tion-ary

 In Adapting, Chronic Illness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Identity, Loeys-Dietz Syndrome, Marfan Syndrome, MCAD, POTS, Thought Management

What alphabet do you use? The medical abbreviations that are common in the lives of a person with a chronic illness? You know, the do-re-mi-eds-pots-mcad-ocd medical dictionary? Do they define you or are they just a background alphabet to your life?

do-re-mi-eds-pots-mcad-ocd, medical dic-tion-ary | Hypermobility Connect

Growing up I loved the movie ‘The Sound of Music’; I’m pretty sure my entire family hated it, but me, I loved it. The scene I liked the most was when Maria was on the green hills, teaching the Von Trapp family what singing really was. She looks at the youngest and asks, “How do you begin reading?”. Then she says “You begin reading with ABC, and you begin singing with Do, Re, Mi.”

Until recently my chronic illness journey was like this. No not Do, Re, Mi, not frolicking in the green hills teaching children how to sing, even though I wish it were like that! But the constant use of medical abbreviations and not understanding everything. “What alphabet do I have to use to understand doctors? What are my Do, Re, Mi’s?”

When you’re young, you go to school and learn how to spell your name. No one in your classroom has the same name as you, or even if there is they might spell it a different way. But your name is yours. When you add a chronic illness, it becomes more difficult.

By the time I started getting sick, I was already struggling with mental health issues. At that stage, I had mental health “initials” in my head, like “OCD”. As the years passed my mental health was becoming more stable, but every doctor’s appointment, every ER, I would hear, “Go get a CVC, CMP.” “We’re going to get an x-ray, CT, MRI.” Or all the above.

Then I realised that as ‘zebras’ we have our own alphabet. Talking about my illnesses includes a different alphabet. When people ask about my condition, I usually start with EDS, which people usually think is erectile dysfunction – “ah no, for starters I’m female, and no I don’t need the little blue pill”. Then I explain what Ehlers-Danlos Syndrome is. A common question I get asked is why I’m in a wheelchair; part of the reasoning is POTS. Again, I have to explain I don’t smoke Pot. This requires explaining as well that it stands for Postural Orthostatic Tachycardia Syndrome, and usually what that actually means.

Every new diagnosis that pops up adds to my story and the alphabet I use. It got to the point where I was confusing legitimate textbook words, the dictionary and those used by someone who was sick. Even without chronic conditions, people type in short form these days: brb, lol, gtg, omg, omfg, rofl, pofl, which, by the way, is ‘passed out on the floor laughing’. But I guess that is more of a chronic illness one huh, ☺

I would always say POTS, EDS, MCAD and GP. When you’re first getting used to it, our ABC’s can be overwhelming. As time has gone on, I have learned that each letter has a different meaning to me. After a while, it can become defining. Why am I getting defined by these letters? Are these letters all I am? Is that all I identify as? Is that all that people see me as, or is that all I see in myself?

I really had to take a step back and think, OK this is not all I am. I am not this medical alphabet, one used by doctors and medical professionals Share on X

I really had to take a step back and think, “OK this is not all I am. I am not this medical alphabet, one used by doctors and medical professionals, but also by this community who attempts to be supportive or attempts to get answers”.

These acronyms, these letters, left me feeling more defined, more confused and stuck on where to go.

Then I closed my eyes and began. I looked back and started re-learning my alphabet, learning how to spell my name. I remember I was the only Brittany in my class. I remember as I sit there, “that’s it! I’m Brittany”. Those letters are the most important letters that describe who I am, that define what I am. Those letters are the ones that I read every morning and before I sleep at night. I’m not my medical letters; I’m not a medical alphabet. I merely have a medical dictionary living inside me.

I am Brittany, B R I T T A N Y, Brittany.

What defines you? Who are you? Let us know in the comments!

EDS = Ehlers-Danlos Syndrome

MCAD = Mast Cell Activation Disorder

OCD = Obsessive Compulsive Disorder

GP = Gastroparesis

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