Permission to love your body? Granted!
Rare Disease Day produced a plethora of memes, images and articles about all sorts of "rare", "not-so rare", "invisible" and "chronic" illnesses. I'm Michele Collum and I am fortunate enough to have seven health conditions listed on either NORD or GARD as "rare".
I'll list them in order of diagnosis, just for fun- because these days, I'm always looking for fun!
Chiari Malformation Type 1
Arachnoid Cyst
Ehlers-Danlos Syndrome
Mast Cell Activation Syndrome
Occult Tethered Cord Syndrome
Spina Bifida Occulta
Tarlov Cysts
Seem like a lot? Well, it does to me as well! Any patient with any one of these disorders will tell you that managing the symptoms, striving to live a normal life and, the worst part--navigating the healthcare industry is challenging. But we do it, we press on and we all truly try our best. By the way, we are all just this special, rarely do I meet a fellow Chiarian or Zebra that has just one-- and there are also the non-rare diagnoses of POTS, gastroparesis, Hashimoto's, CSF leaks, craniocervical instability, atlanto-axial instability and the list goes on and on and on.
While skimming Rare Disease Day posts on social media, I came across one that had a list for patients granting permission, like, "It's okay to rest when you need to. It's okay to cry when you're sad or having a bad day." I can agree with those two, but then the third one on the list was this,
"It's okay to hate your body...."
I am sure my mouth dropped open. I said audibly to my phone screen: "No, it isn't!!!"
I grew up in a very small town in rural Mississippi. I was a skinny, boney little thing- to the point that everyone commented on it. I hated my body for being so skinny because people always commented on it... "Are you anorexic?" "Do you eat?" I wasn't anorexic and I ate everything in sight. Then, fast forward to after my babies were born, and the body hate flipped. Now, I hated my body for clinging to every pound and not having the energy to be more athletic. My body just didn't have the stamina of other people/women my age. My ex-husband commented on it all the time, "You're just lazy and sickly..." and a few other choice words. I had trouble with scarring after a c-section, I had simple wounds that wouldn't heal. I had infections that took round after round of antibiotic to heal. I was deemed, by the Ex (and I'm sure others) to be a hypochondriac.
Doctors were always baffled. Why wasn't I healing? Why didn't I have energy? Why were my labs always perfect when I felt like warmed over death? Why was my blood pressure always so low? And of course, there was the Ex, "They can't find anything wrong with you, because it's all in your head... you WANT to be sick!"
For the record...NO ONE WANTS TO BE SICK!
Many nights I cried in the shower, asking God to make me well, wondering if it was all in my head. Many trips to the doctor ended with me yelling at my body in the car on the way home. I said horrible things to my aching joints, my throbbing head, my fatigued body. I truly hated the flesh and blood prison I was trapped in. In the mornings, I would look into my own eyes in the mirror and say, "Why can't you just stop being so messed up? You are a drain on everyone. No one can really love someone as messed up as you."
When I tell you the body hate was bad, ya'll... IT WAS BAD!
Fast forward twenty years -- a little more than twenty actually. I'm divorced from the Ex (keep your applause down) and getting ready to walk down the aisle one more time. I've just had brain surgery for the first time, and I can feel the fear inside of me that I will again be a burden on my husband. I fear that this sweet man loves me now, but if I can't get this rebellious body under control, he too will eventually see me as broken, defective and a looney hypochondriac that is nothing but a drain on our bank account.
Again, I'm in the bathroom one the morning, looking into my own eyes, asking the question, "Why can't you stop being so messed up? No one can really love someone as messed up as you." And then... I hear it for the first time. My body takes up for itself. I don't know if it was because of the validation that flooded my body when I was diagnosed with Chiari Malformation, a diagnosis that explained every single one of the medical issues I had encountered since birth (and even before birth) or if it was because I had been working so hard to heal emotionally after my divorce... either way it didn't matter all that mattered was my body saying to me silently, "Can't you see I'm trying? I've gotten you this far, haven't I? I've been here for you all along, even when you have treated me so badly."
Instantly, tears filled my eyes, I reached up to the back of my head and ran my finger down the long incision on the back of my skull, feeling the stubbled hair growing back into place. This bundle of flesh and bones was no prison for me to escape or enemy for me to beat. This miraculous, complex ecosystem of cells, genes, fluids, muscles and bones had been here supporting me the whole time. Carrying me as best it could. Maintaining homeostasis against huge stacks of challenges. I had never been grateful to it or appreciated it. I was barely even kind to it. I constantly demanded more, more and even more.
I would like to say that everything changed with my relationship to my body that day, but it didn't. My gratitude started that day, but there was an ebb and flow of being grateful, then really frustrated, then angry. Eventually, I would hear that voice again, crumble into tears and set out to be kinder and more gracious to my amazing body.
Now, ten years after the Chiari diagnosis with three brain surgeries, two spinal surgeries, and multiple diagnoses to my credit, I can honestly say, I do not hate my body and it isn't okay for anyone to hate their bodies. Am I glad to be diagnosed with these seven "rare" disorders (along with countless non-rare ones)? Of course not! But today, you won't hear me say that I hate my body and I won't advocate for anyone making body hate okay, regardless of the reason.
Now, instead of a morning hate session with my mirror, I wake up and take an inventory of pain before I start to move. Usually, my right shoulder has a subluxation that occurred during the night, so I gently move this shoulder back into place, stretch and whisper to my body, "Thank you sweet body, you're doing a great job." Then together, my body and I slowly move out of bed making sure all of our parts are working together. More often than not, there is a bone or joint out of place that is causing pain or difficulty walking. Yes, it's frustrating, but dwelling on the frustration isn't going to get me motivated, so I usually say out loud, with as much kindness as possible, " So, that's what we're doing today..." and I set about navigating the rest of my day, evaluating what I can handle, what needs to be rescheduled, if I can drive into the office or if I should work from home, etc.
Am I a Pollyanna that is sickeningly positive? You bet your subluxated sacroiliac joint, I'm not. Sometimes my, "so that's what we're doing today" is drenched in tears or metered out in between sobs, but it is never, ever uttered with body hate.
.
I'm Michele Collum, and I evoke the permission granted in the social media post I read on Rare Disease Day that stated, "It's okay to hate your body" because, honestly, my friend-- it is not. So, I challenge you, if you are putting a lot of time and energy into body hate, why not flip that script for a bit and see what happens? If you've participated in body hate for years, like I did, it will take time to mean the kind words you say to yourself, but with time and practice, you can replace the negative, default, more popular body hating habit with a new positive, body and soul nurturing habit. Just stick with it. Say the words out loud. Let your body hear nice, positive words for a change. You may be amazed at the changes in your emotions and overall well-being.
After all, you really do catch more flies with honey, just ask any good ol' Southern girl!
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"I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well..."