I was told that I had White Coat Syndrome when I always had strange blood pressure issues. One of many diagnoses I assure you.
After I had my son, where my blood pressure nearly killed us both, it became about my weight. I know that weight does have an awful lot to do with blood pressure. Of course, it does. But my overworked primary care physician, who actually told me he’s too busy for me… It was his only answer. For every problem. Every time. I made a joke with my husband that I was going to develop a drinking game when I went to his appointments, and take a shot for every time he blamed something on my “morbid obesity.”
I am actually not that heavy. I’m not the skinny girl I was in high school, or even the chubby girl in middle school. But I have had food problems since I can remember eating. Mostly bingeing on high carb items brought on by mental stress and impuslivity issues. Not to mention low dopamine, and eating during sleep issues. This isn’t about my weight, though. Enough people are interested in that that I don’t need to talk about it.
It’s just that… I’ve never gotten help for a problem I’ve had for a very long time… because I knew what they would say…
Like a lot of neurodiverse people I deal with a lot of chronic physical pain, mostly in my muscles and joints, especially my hips, wrists, neck, hands…. Ok, pretty much every joint, every where. Muscles too.
After I had my son, it got even worse. I was told that I had carpal tunnel related to my pregnancy. Neuropathy from gestational diabetes. I was told that it was my weight and my posture. I was told to go to a chiropractor. I’ve been tested for diabetes so many times, celiac, hepatitis, heart disease, and even cysts on my ovaries. Which had one of the most painful tests I’ve ever experienced, because I also can’t actually fill my bladder. Never been able to. The pain was excruciating. And all for nothing. No cysts, no answer.
I was looking up my own information on autism comorbidites, when I came across Ehlers- Danlos Syndrome. I knew that it was something that effected the autistic community, but I mainly understood it as a mobility issue. I simplisticly thought, “I can walk, that can’t be me.” And that ever constant voice, “Don’t borrow trouble. Don’t take what’s not yours.”
But then I came across the diagnostic critera for EDS and POTS (Postural Orthostatic Tachycardia Syndrome) and I saw all my troubles laid out before me. It was an “aha” moment for sure, but it was also an “oh… fuck.”
You see, the symbol for the Ehlers Danlos Society is a zebra. Becuase of the phrase, “When you hear hoofbeats, think horses, not zebras.” Well people with EDS are the zebras. They are the people that don’t get believed, who get called hypochondriacs, alcoholics, liars, Munchausens, basically an irritating nuisance. The people who get told by their doctors they are too busy for them…
Just to be clear, when he told me that, I hadn’t seen him in like over a year. I was just worried about my blood pressure issues. So, when I finally got the courage up to make an appointment, and he told me that I should get a different doctor about two sentences in… Yeah… I’m sure he was overworked, legitimately. It just was pretty… fucked up.
When I called him during the beginning of the pandemic with my sickness, he pretty much dismissed me then too. But because I have agoraphobia, I was ok with his “call back when you need a ventilator” attitude that was so common then. Everytime someone lectured me on not going to the hopsital I could say, my doctor says to stay home and call back when it gets too hard to breath.
He’s not a bad man. He’s just pretty clear in his biases as he has always treated my husband very differently. He just believes him. Immediately. Doesn’t second guess him. Doesn’t tell him to go away.
But… that’s a tidal wave of bullshit that I am not ready to battle. That’s just being a woman. I can only imagine what it’s like for women of color. Or an immigrant woman. That gets you a hysterectomy in a detention center, apparently. Or if you go back far enough, sometimes, a labatomy. But that’s a whole other thing.
So I have this very probable diagnosis staring me in the face and I just don’t want to deal with it. Even if it is an answer for all the pain. It’s not a curable thing. It will still always be a problem. I will still be disbelieved. It was both a relief and a heartache. I can’t have another diagnosis. I can’t go through the gauntlet of opinions and second guessing and disbelief. Not again.
So I wrote an email to my doctor asking for a refferal to get genetic testing. No diagnosis. I don’t care about a diagnosis anymore. I just want to know if I carry the mutation or not. I want to know for my son. That’s it.
Zebras sound like guinea pigs… the noises they make. Did you know that?
So when you hear a guinea pig…Make sure it’s not a girl guinea pig. They’re probably pretending to be a zebra for attention.