Zebra Black and White

Who Knew? I’m a Zebra!

 

Yes! You heard me right! I’ve come to a realization that my entire life I have, in fact, been a zebra.

Not only that, at least two of my children are also zebras. Chipmunk for sure is, although I’m waiting for verification, and Tidbit, oh she’ll be one too, almost certainly. Tigger? Well, the verdict is still out there. The current evidence says probably not, although she has a few traits, so it could be. I also believe my mother is of the striped persuasion, although we haven’t really been able to talk about it much. It’s not really something one likes to discuss–being a zebra.

So right about now, some are going to start thinking I’ve been dipping a little too heavily into my stash of Tramadol. I guess I should explain myself. In most medical schools, doctors are taught an old adage, “when you hear hoofbeats, think horses, not zebras.” It’s a memorable way to teaWhy-the-zebrach impressionable young wannabe Doctor House-types that 99% of the time, the symptoms they see are not going to be for some exotic illness, but something more bog standard. I suppose it’s a useful enough metaphor, except for one problem; zebras do exist!

I guess “when you hear hoofbeats, think horses, not unicorns, although remember that occasionally it will be zebras” just doesn’t roll of the tongue in quite the right pithy manner.

So, my whole life, I’ve had a load of odd little quirks in how my body acts–some, like my droopy eyelids and odd scars from surgery that wouldn’t hold the stitches and stretched across until it’s now over an inch wide, just seemed like oddities. Some, like my heart palpitations, TMJ that required a special splint and veins that collapse and are battered from repeated failed blood draws, cause more thought. Others, like my back, knee, ankle, shoulder and neck pain that never seem to go away, can just stop me in my tracks though. My knees and my SI joint, in particular, have robbed me of things I used to love, like hiking, camping, white-water rafting and, more immediately, carrying my precious children up to bed. I’ve gone sedentary, and I hate it! I can’t even walk to my kids’ school to pick them up. I will pay for a trip to the grocery store for days after, and (I can’t believe I’m saying this publicly) have to weigh up if a joyful night with my husband is worth struggling to walk for a few days.  My body has been getting progressively worse, especially since having my children. I love them dearly and wouldn’t change a thing, but carrying and bearing them has torn my body apart.

But then a friend, after a post on Pumpkin’s hypermobility and physiotherapy for delayed gross motor skills, told me her family has a genetic connective tissues disorder called Ehlers-Danlos Syndrome (EDS). For two years I filed it away in the “interesting, but useless information” file. (You have one of those, right?) I was occupied with the pending delivery of my third baby.

Nearly 1.5 years later, Tidbit had passed that joyous time where the health visitors and paediatricians stop saying “let’s wait and see, every child develops at a different pace” and get worried looks on their faces instead. She had joined her sister in needing physiotherapy because she wasn’t sitting up, holding weight or rolling over when she was over a year, and her hypermobility was keeping her development at bay. Then I pulled out the old file, looked more closely for my girls, and realized that those seemingly random quirks in my body finally made sense. You see collagen is the building block through the entire body that makes it all work, so when it goes wrong, it’s a systemic problem, not just an isolated thing.

Thank you Elizabeth!! pretty-thank-you-tree-clip-art

So I’ve been trying to get help for my daughters. I don’t want them reaching my age and having a body that’s lost it’s coping ability because I didn’t get them help when they didn’t “just grow out of it.” Talking to professionals about my daughters is another aspect I’ll discuss on other days. There’s too much to cover here, but I can see how my early delays looked better as I got older and just wasn’t very athletic or fast. I didn’t understand what pain was normal and what was not growing up, so I thought my burst of “growing pains” that left me in tears at night and stretch marks in adolescence were normal and I shouldn’t complain too much. Nobody likes a “Moaning Myrtle!” So I’m taking the steps to get myself diagnosed now. Then, hopefully, I can access better support, and I can argue more definitively that the genetic disorder I have is also evidenced in my little monkeys. While there isn’t a cure, there are things that can be done to improve daily living.

Switching Seats

The thing is, this is a new role for me. I’m a psychotherapist by trade. I’m used to being the one sitting in the treatment provider chair, not the other way around! I’m used to researching things, learning diagnostic criteria and treatment protocol and helping others through their challenges. Now suddenly I’m having to switch seats. I’m the patient this time and learning quite a lot about how demoralizing it is when you try to explain yourself, but it’s just so important that it comes out in a jumble and you know you are stammering and forgetting the most important parts. I’m learning what it’s like to have professionals balk at your understanding of your own mind and body and give you a condescending figurative pat on the head and send you out with instructions to take some paracetamol (Tylenol for my American friends). Most of all, I’m learning how terrifying it is to tell people you believe you have an incurable illness and then fighting down that maddening voice in your head that is saying “oh, sure, make up your excuses. We all know you are blowing it out of proportion! They just think you’re a hypochondriac, but they are too polite to tell you! Anyone can see that you don’t even look ill”

I don’t really like this seat any more . . .

Except. Well. Except a tiny, minuscule speck of me is fascinated. I don’t want to be in the patient seat. I definitely don’t want my children in the patient seat, but for the first time, so much is making sense, and that’s enlightening. It has certainly changed the way I practice as a therapist. I’m having to put my money where my mouth is, so to speak–really using the very tools I’ve practiced in a much more personal way. So many odd things fit for the first time. It’s enough to face down the slew of doctors who know less about this disorder than I do because they only had about a three minute discussion on it in medical school, but then they roll their eyes at me when I try to explain what’s happening in my own body. It’s enough to have them doubt my ability and training to read quantitative scientific research, assuming I just heard something on Mumsnet and randomly diagnosed myself (magically forgetting that other professionals can understand science jargon and statistics too). It’s enough to face months, maybe years, of waiting and seeing strings of different professionals before I get referred to those with the power to not just pass it on to a higher placed consultant. But I’ll tell you what makes it the most of all. It’s enough for me to pray that maybe, just maybe, if I do this, my daughter’s won’t have that voice quite as loud in their heads that tells them they are just weak.

and that’s enough reason for me!

So yes, I’m switching seats. I’m a care provider and I’m a patient. I’m learning to integrate both sides as part of my whole experience. I’ve decided to share this blog in hopes that I might strike some chords that help others to understand or not feel alone. I’ll probably share some tools that help from my work too. I wasn’t going to share it publicly until I had a diagnosis down on paper, but something in my heart is saying that the journey is the meaningful bit, not just a perceived destination. So here I am, swallowing my fear and putting it out there for the world to see. If any of this strikes a chord for you, feel free to leave comments so we can share together. Here goes nothing. Deep breath, I’m hitting “Publish”  . . .

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12 thoughts on “Who Knew? I’m a Zebra!

  1. Hi Jana, Just read the blog. Well done you! Really enjoyed it and am looking forward to sharing more in this journey with you. Have passed through a bit of a battle myself to have my UCTD diagnosed and still fight on a daily basis to not feel I’m somehow imagining all my pains and bizarre physical symptoms despite a diagnosis. I think several years of being dismissed and told it was all in my head will take a bit of time to undo! Its really inspiring to see what you are doing to fight for your family’s health and publicising this for others who may be struggling with similar challenges . Personally I find our chats a great support -just talking with someone who gets where I’m coming from is so beneficial. Cant wait for next blog!

    1. Rach, that talk about battles with connective tissue disorders (and a few other bits 😉 ) did me a world of good! I’m grateful for your friendship, and look forward to your participation here as someone who gets it!

  2. Well done Jana for taking this plunge! I read with interest. Hope this will lead to something good for you and your family.

  3. Oh Jana, what an adventure. I’m oscillating from feeling sadness and concern to being just impressed with what a good writer you are. Such gifts- to have both the story and the voice to share it.

  4. I really enjoyed reading your post. I’m a Clinical Social Worker as well who was recently diagnosed with EDS & POTS. Looking forward to reading more of your blog. I can definitely relate to having to switch seats.

    1. Nancy, sorry I didn’t reply earlier. It’s an interesting experience, isn’t it–being forced to become the recipient of services. Certainly helps with the empathy factor, I suppose. :)

      And thanks to my other friends who have been commenting. I love hearing back from people here on the page. It means a lot!

    1. So glad you find this helpful! I’ve not been as active as I hoped in recent days after some meds changes have made me drowsy. I’m hoping to write more in the next few days though. Just curious, what’s your experience with? EDS, therapy skills, etc?

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