The Day I Had A Name For It

By the time I was diagnosed, I had been practically bedridden with pain and fatigue for a few years. I say “practically” because with the taser-like pain in my spine, I couldn’t lie down, sit, or stay in any position for long, not even lying in bed, no matter how tired I was. If only I could sleep standing up like a flamingo! But then my feet would give out. Okay, never mind.

All my joints hurt, but with my spine pain so bad, I could hardly notice the rest. My neck and head pain was the worst. I often begged Mr. Pennington to guillotine me. Like, often. 

I tried but I couldn't find anyone to tell me what was wrong with me. I had been told I had chronic fatigue and fibromyalgia, and also EBV, which was the Lyme back then. Part of the problem was that I had been seeing a lot of quacks (chiropractors and naturopaths), that sad lot who wasted their money on a bogus education and have no medical training, no understanding of disease or the human body, so they just make stuff up! Even worse, to keep you coming back, they make you afraid of real doctors. Don’t get me started!! I was an easy target, as I had suffered repeated humiliations by MDs all my life, growing up seriously sick but  looking normalish, so I was seriously confused. What a mess!

For the millennials reading this, there was a time when there was no internet and no Google in which to type your symptoms, and no Facebook on which to immediately connect with thousands of people suffering with your same problem. Dark times. Your sources of information were: (1) the bookstore, whatever it had in stock; (2) the library, good luck finding anything searching the paper card catalog—yes that was a real thing; (3) local news; or (4) paying an expert, such as a doctor, which had always been a completely disaster for me. Doctors were all privileged white men back when I was growing up. Every single one. Nothing wrong with privileged white men (for sure!), but back then they were too smart to open a book! If they didn't know what was wrong with you they’d make fun of you rather than try. It’s a lot better being a patient these days. But still too hard.

Back to my story. A day came when someone told me what was wrong with me. Ironically, he actually was a chiropractor so I will give him props for being the only ethical one I ever saw. He’s also the guy who sent me to Dr. Plance for prolotherapy. Every now and then in the midst of absolutely everything going completely wrong, something amazingly right happens.

I was 33 years old. I thought I was sick. This is how it went.

Him: You know, your joints give when I press on them. All of them. You have a congenital problem.

Me: What? No. I’m weak because I’ve been sick for so long.

Him: Yes, you are very weak. This is a birth defect.

Me:  I think I’m just sick. 

Him:  Yes, well, this wouldn’t be from sickness. Your joints give, and this isn’t normal. I can feel it. See what happens when I press on you. And, look at how much your skin stretches compared to mine.

Me: My skin is not different from yours.

Him: Yes it is. Look again.

Me: I don’t see what you are talking about.

Him:  Really? Let’s talk about your skin.

Me:  People tell me all the time how beautiful it is. I think it's because I eat organic!

Him: Hmm.  

Me: Well, it can tear sometimes, but that’s not unusual. I mean, my father’s skin tore. He had special soap from the dermatologist.

Him: That would be part of this condition.

Me: My husband gets mad at me because of my bruises. Because I don’t know where they come from. He thinks I’m always hurting myself but I don’t remember how I get bruised. He doesn't believe me.

Him: Yeah.

The room was starting to spin. 

When did I get sick? Was it... always? Yes. I was always struggling, always different, but only from the other kids at school. Compared to the other kids in my family, I fit right in. They had weird problems, too.

I’d been born with abdominal hernias so severe I had to have surgery at two months old. 

I was the only 13 year old going to the doctor for back pain. That’s when I wasn’t busy at the podiatrist because my feet hurt so much I could barely walk. And those orthopedists at UCLA offered to break my legs and straighten them so my knees would stop hurting, while they snickered about my pain. That surgery did not seem like a good idea. I took a pass. 

None of them could ever tell me what was wrong with me. They suggested I lose weight, but I wasn’t fat! I went to physical therapy (wth no real diagnosis!) and got nowhere. I wore braces that did nothing except make me feel ashamed. It was so humiliating and upsetting. Finally, I wouldn’t go to the doctor anymore. I stopped complaining about my joints and hoped I’d outgrow it, like they said. By high school, carrying my back pack was an impossible struggle, and I was downright distracted by how bad I felt all the time. Oh well. I didn’t know any different. I’d never been normal.

Wait... could this chiropractor be right?

Oh, no! He's making some sense. No no no!!! I’d like a disease, please. Something that can go away, thanks very much.

The room started to spin.

I had to get out of there and prove him wrong.  I knew I didn’t have this congenital, incurable, hopeless nonsense. He’s an idiot!

When I got home I read everything on the internet I could find about Ehlers-Danlos Syndrome. There wasn’t much back then, and it was all in medical language, but enough was there.

What I read about Ehlers was the story of my life. Like reading my diary. I was busted.

I called my aunt and asked about us, how we were growing up. I had seen her perform a circus trick for laughs, bending over and touching the floor with hands flat and legs straight, something I had just learned from the internet is part of the EDS diagnostic criteria. Things were getting suspicious.

 “Oh I do remember!” she said. “You kids were such crazy contortionists! Is there something wrong with that?”

“Yes, well you end up with early arthritis and osteoporosis,” I mumbled.

“You know, I always had to be so careful doing anything or I’d get terrible joint pain,” she said. “I just had my back x-rayed. It looked so bad the doctor thought it might be cancer. Luckily it’s just arthritis. Say, I have really really bad osteoporosis . . .”

Yeah. Totally busted.