By: Tara Beckwith
Hi! My name is Tara. I’m sick and tired. I really am. So are many others who struggle like I did to get properly diagnosed. I’ve seen over 25 medical specialists. 25 different doctors doesn’t mean nothing is wrong with you or that you are fabricating signs. You read that right. Signs. Symptoms are subjective because we can feel them, but nothing is visibly obvious. Signs can be seen AND felt. Each one of those appointments were presented with signs, most signs were discovered by a specialist other than the one I was seeing. So that led to another referral, and another, and another. Until I was tired of getting the runaround.
I begged for the puzzle pieces to be put together. I had gut problems. Dislocations were always known but never addressed, until I purposely dislocated my fingers in front of my Autonomic Specialist. I would lose vision in my right eye several times a month, my muscles would stop working and I would choke on my food. My rib cage would also lock up. I knew I had an enlarged heart and chest pain, but no anxiety attacks so Xanax never worked. I tore tendons simply pulling up my pants and I can’t even brag about a torn rotator cuff, a common athlete injury, because I’m not an athlete.
Doing yoga tears my muscles, swimming makes my knees bend backwards like a flamingo’s, and when I run, by my second stride, my right hip falls out of socket. I pull it back in, yes I can do that! It’s my super power. But I’m unable to feel my legs when I run, all doctors have been made aware of this but none of them addressed it. So I keep telling myself “lift forward” with each step and by the time I’m done, I fall. I can’t feel my legs and I thought this was normal until one day when we passed by a marathon, I asked my husband “how can people run so far when they can’t feel their legs?”. My hubby thought I was speaking Greek. Apparently, I’m different.
The physical issues were one part, and then the chemical sensitivities started multiplying and new allergies popped up. Just last week grain got me. Bread is no longer my friend and I’m crushed. I can’t even sneak a bite or I feel like my insides are twisting and on fire. I am now also allergic to mosquitoes.
I left the medical group that clearly wasn’t listening to me. But before I left, I got my chart copied to take to the Mayo Clinic. That definitely raised some flags because I got a call from the office of the Chairman of the hospital I was in, who is also the head of Neurology. The next day he requested to meet with me. He walked in with the loaded question “how are you?”. I replied that I was fed up, frustrated and tired of his doctors deflecting their ignorance onto me.
He listened to me, performed some tests and diagnosed me with Dysautonomia and POTS with Bradycardia. Those are two more diagnoses to go into my chart. All other 18 doctors found something and gave it a name too, but through it all I was considered crazy. At first, I played their silly game. Then I left and I won.
So after all the “have you seen a psychiatrist” questions, I was finally told “how does it feel to know you’re not crazy?”. I cried. The second to last doctor I saw was a rheumatologist, and he saved my life. He validated me. He confirmed what I already knew. I have Ehlers-Danlos Syndrome with cross-over types.
EDS is a syndrome because it cannot be cured. It’s caused by faulty collagen genes and affects organs and risk of rupture. It also causes brittle bones, body temperature irregularities, heart murmurs, enlarged hearts, aneurysms, vision problems, muscle and skin tears and many others. We can also pass gallstones. That’s another super power! And vaccines rarely work for us; I’ve had measles, mumps, and I had chicken pox 10 times. While my doctor wouldn’t believe me, I contracted Whooping Cough 1.5yrs after getting a Tdap vaccine as an adult. The most recognizable and common form is hyper-mobility and we are seen with fascinating flexibility. We are bendy.
The last doctor I saw was a geneticist and she confirmed all of my diagnoses. Some say it’s rare, and some say it isn’t. The truth is some types are rare, while hypermobility EDS is commonly overlooked and misdiagnosed as fibromyalgia, leading to it being rarely diagnosed.
We are strong and we wear stripes- Zebra stripes because when doctors hear hoofbeats they think of horses, not zebras. Zebras have hoofbeats, are rare and so are we. I wear zebra stripes on my right shoulder, and if you see me out and about, introduce yourself, I love making new friends.
Tara; I am glad that you are doing as well as you are doing. I know that your journey has been tough and I sure hope that you have not passed very much of it onto your son’s, but I fear that genetics may not be their friends either. It takes a village to educate our children and sometimes it takes more than that to diagnose our ailments. I was privileged to have you as my student and to have a small role to help you unravel all of the mysteries of your life. I wish you peace and comfort.
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