Beauty / Confessions

[CONFESSION] The Outlier Body Type

I guess if we had to label my body type I would fall back to what my sister said while we were flipping through a month old issues of Cosmopolitan.  “You’re ruler shaped and I’m hour glass.”

I was, naturally, envious.  Isn’t hourglass the “more womanly” shape?  The shape that says “I have curves, voluminous breasts, great hips, an ass AND  a well defined waist.”  These have been considered, despite the fashion industry’s most showcased size 0, the desired figure of femininity.

So, I’m a ruler.  For the most part a straight line  with a tendency to gain weight right in the middle for that lovely, and desired by some, I guess, potbelly.  So I know my “trouble spots” and I know some exercises and I know what food I like and I know what weight I’m cool with… and none of this matters what so ever.

My sister and I over the last year and a half have been working with our doctors and physical therapists to cope and learn to live with an inherited connective tissue disorder known as Ehlers-Danlos Syndrome.

To get even more specific we were diagnosed with Classical Type 2, or Hyper-mobility Type.  The main take away, to perhaps oversimplify what this means is that my joints are all loose.  While this had its fun side, allowing me to show off my skills for my University’s circus when I was in undergrad and freak out my friends and family on the regular while growing up with my feats of mind-bending and freakish flexibility it comes with a price, a price I’ve been paying over the last few years.

When your joints are loose, it takes a lot more to keep yourself upright and sometimes it even takes some focus and repositioning to keep basic parts in place.  The eye opening moment when I knew I needed to seek help for keeping my body together happened on my way to work one morning.  I was a but tired, only getting about 5 hours of sleep the night before and naturally I ended up catching a later and mostly full bus to my office.

I was standing, holding one of the bars running along the frame of the bus when we jerked to a sudden stop.  Momentum is what sent me pivoting around towards the front… and when my body lurched forward, my shoulder popped out of its socket, pivoted around towards the front of the bus with me before taking the next jerk in our stop.

I was shocked and stood there stunned as people pushed past me to get off the stop we apparently almost missed.  I was shocked that it didn’t hurt.

in socket

in socket

out of socket

out of socket

I’ve always been able to pop my shoulder out of its socket at will, but it had started to slip out more and more on its own when I get tired.  There had been nights already when I would notice it slipping if I slept in the wrong position but it hadn’t been pulled out of place so violently until that day.  This is when I knew I needed to seek physical therapy.

The main takeaway from my doctors and my therapists on how to deal with a condition like this is that there is no cure, there is only management. Management of building more muscle to overcompensate for the loose tissue, and pain management that can be dealt with via medication and exercises.

But the big thing that has come up, more with some relatives than with me, though I’ve had this conversation with my doctor, is that any excess weight will only be problematic and progress the joint damage faster than it needs to go.  Basically, as I age, my joints will be able to function on their own less and less.  This basically strips me of the right to put on a few pounds because these extra pounds, unless they are muscle holding my joints together and up right, will only cause more damage.

This leads me to a significantly more utilitarian view of my body, but has also left me on the outskirts of the debates popping up about body image, fitness, and weight.  I feel like I’m almost not allowed to have a stake in the arguments because I’m such a deviation from the norm.

Does this make me less of a woman?  No.  Everyone has a different body type and everyone has different health needs.  I ended up with a body that demands hyper attention be paid to it just so it can function and I’ve adjusted to it.  Its not exactly something I can opt-in or out of, especially when these needs also make me prone to hypotension. If I don’t drink enough water or eat enough salt I lose my balance and nearly faint.

Good news? If I go to the gym and do the exercises that help stabilize my neck, back, and hips, I feel better the next day.  I have less pain.   If I skip a day or skip multiple days?  I start to feel pain, particularly in my lower back and shoulder blades.  I hunch over more.  Walking becomes difficult and I end up with extreme fatigue.

There is a vain side of me that likes this physical reinforcement of my gym habits.  My increased gym regiment has left me with toned arms and legs and my belly pooch is shrinking, slowly.  But there’s an anxiety that comes with not being able to rely on your body like everyone else.  My heart is already literally broken.  I’ve known since the age of 12 that I couldn’t count on my body to always be healthy but now it’s become so much more tangible and so much more real.

When it was just a broken heart I felt I could still appreciate my body.  I loved my boobs, my hair, my overall shape.  When everything else started to grow weak and the pain became more frequent and I could give it all a diagnosable name, I started to fall out of that love.

I want to be body positive, but I just feel so betrayed.

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4 thoughts on “[CONFESSION] The Outlier Body Type

  1. Pingback: [Confession] Why I Probably (Maybe) Won’t Procreate |

  2. “This leads me to a significantly more utilitarian view of my body, but has also left me on the outskirts of the debates popping up about body image, fitness, and weight. I feel like I’m almost not allowed to have a stake in the arguments because I’m such a deviation from the norm.” I feel like I’ve been trying to articulate this in my own mind for so many years, and you did it so beautifully here that it really has touched me. I sometimes find myself growing weary and even angry reading about issues regarding body image- because it’s true that it is a pastime of the mostly well/able bodied. Hearing someone complain about weight when you’re thinking about basic mobility, and wondering if you will be in a wheelchair at age 50, can make you feel terribly left out. I agree that it’s hard to feel connected to body positivity, and it’s completely natural that you would feel betrayed. I found that online forums specific to my issue to be pretty much the only place in life that I heard the kind of body positivity that I needed to hear. Our body positivity may not have to do with fitting into x size of clothes, or dealing with images in the media (since we’re so outside that anyway), but I think it can be more based on strength and resilience.

    • Strength, resilience, and some inner voice/force pushing us forward. writing and reach out to others (and hearing back) has really been helping me and it’s always good to hear that you’re(I’m) not alone in this.

  3. I enjoyed reading this post in particular because I’ve never read/heard/met anyone that has connective tissue disorder and the hyper mobility type like myself. It is frustrating that our bodies just have a higher tendency to breakdown on us compared to the healthy, “normal” bodies. My rheumatologist has me go in for OMTs (Osteopathic Manipulative Treatment) once a month to help align my body; it helps immensely. It took me a while to stop resenting my body for how easily everyday life can beat it down (I have 2 other autoimmune diseases). But our bodies can do so much for us regardless how loose and breakable they are. Sure, it’s unfair that hips, shoulders and other joints bounce out of place while stretching, but I know it’s a privilege to be able to move at all.

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