Why I Choose to Stay Glamorous With EDS

I may not appear to you in a ballgown, and it is painfully clear that I painted my own nails, but you had better believe that I am glamorous.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

You can only see so much. When I am alone, a side of me that nobody else knows comes out. She is my inner burlesque dancer. My rebellious, sexy, powerful and confident self. I bend and move, wriggle and writhe, acting out each word or motion. My drama teachers would either be thrilled or horrified, but as I said, no one is around to see. The enthusiasm I contained when my portrayal of Icarus falling from the sky concerned my own mother and still lies in my expressive soul.

At the time my symptoms increased, many things about myself changed. For quite a while, it was difficult to truly understand all the emotions and ideas inside of me, let alone communicate them with others. Through seven years of intense illness and pain, my colorful spirit survived. Battered, bruised and often confused, but hanging in there. Eventually I learned how to move past surviving to actually thriving. Now every day is a lesson in being more of the woman I am meant to be, a test of my ability to persist in the face of such adversity and a celebration of how much I have overcome.

Because of my disability, Ehlers-Danlos syndrome (hypermobility type), I have a whole host of issues that come and go without warning and range from difficult to impossible to see from the outside. Let me tell you, it is not easy to make rolling your ankle because you decided to wear heels that day look sexy. Epicanthal folds can really be a pain when trying to get your eye shadow just right. Some of us get allergic reactions to brands of cosmetics, or our skin is just too sensitive to handle the repeated application and removal of products. Some people with EDS have a Marfanoid body type, which can make finding well-fitting clothes quite difficult. I have taken to going first to resale shops, because the variety gives me a better chance at coming away with something that fits.

There are a thousand reasons to just throw on sweats and go, but just one to take the extra time and effort – it makes me feel better. Even if it means jeans and a tank top, it makes me feel like more of a person than sweats and a big T-shirt. Looking down at my blue and purple glittery nails brightens my day, especially when I type a lot and they become little shooting galaxies across my keys.

Even if I am too fearful to be as wild as my inner self would like, I embrace her whenever I can and love the feeling she gives me. It feels like the old me, the real me, if only for a while. No matter how long I go without seeing my true self look back in that mirror, she always returns to me. When the house empties and everyone is gone, I will act out every detail of my favorite musical and do a darn good job, in my opinion. My illness has fought hard to take my sense of beauty, of being worthy of desire, but even though it may have gained some ground, I will retain who I am. I try every day to let my light shine a little bit more, to be an example of embracing one’s self to my children, and it makes me more comfortable being my true self around others.

My illness created a divide within me; I loved my mind, yet I hated my body. My mind was not fragile, my spirit was stronger than my bones. It wasn’t that I thought I was ugly, it was that being beautiful stopped mattering when it represented the body which I thought had betrayed me. My hatred of my body for not living up to what I had believed it should resulted in my neglect of it. I despised and resented my flesh as the inadequate frame hiding my capable mind. My physical form wasted away because I did not treat it with the same care as my brain. Then it began to affect my memory, and I realized I was not one or the other. My body is far from perfect, but I have embraced its abilities, limitations and beauty. I stopped trying to hide so that people wouldn’t pity the broken girl and started being the glamorous woman I was born to be. Now I am gaining weight, walking further, dancing and feeling divine in both body and mind.

 

Being chronically ill can make you feel humiliation and degradation to an extent that few can comprehend, and through seemingly unimportant things. Over time, we become dehumanized in the eyes of those around us, and in our own eyes. We so often must choose function over form that doing something above and beyond to make yourself feel special is lost by the wayside. Other people begin to decide when you eat, where you go and many other things in your life. Through all of this, it can be hard to feel pretty. But we are pretty and we are worthy of the same trinkets, fashion, hairstyles and anything else that makes us feel beautiful. When you are throwing up for six days straight and have broken more than one rib in the process, you deserve to feel prepossessing.

I may not appear glamorous in your eyes, but then again, you probably don’t see me as a sick. That is because I am both, and much more, a complex combination of many wonderful and frustrating qualities that make me human. I will continue to embrace my allure in whatever ways I am able, may it be mental or physical, in celebration of everything I am. My physical half may never be perfect, but obviously my brain has its own issues if it didn’t know we were all in this together. Now we may falter, but we rise as a team and sashay down the catwalk. I may always walk a tight rope, balancing like a disastrous debutante between heaven and havoc, but I will enjoy every second of my beautiful life.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

Thinkstock Image By: Ivary