Grace

For me, the thing about beauty is— when you’re sick it doesn’t matter anymore.

It’s not what’s important. Some of the most beautiful girls I have ever seen have feeding tubes, J-tubes, and Ostomy bags. It’s normal to see that as someone who is chronically ill. These are the machines that keep them alive. That is beautiful. To see modern medicine provide people with the health they need to function, to live. The only thing that matters is getting better, and for someone who is chronically ill, the term “better” is used loosely. We’re never going to be 100% better, and we’re never going to get over it, but we understand that we can be better than what we were in temporary situations. Some of our scars will heal, bruises will fade, medicine side effects will go away when changed, and some days will be better than others… that’s what’s worth it in the end.

A lot of my early understanding of what beauty is came from my mother. She always told us that everyone was beautiful, and because individuals possess there own kind of beauty, it meant that we shouldn’t compare ourselves to one another. We’re all different growing up. Despite that I’m from a big family and have a twin sister— even compared to her, I’m very different. We are different heights and sizes, have different facial features, and even quirks. So, to my mother it was really important to have us understand that beauty comes in a lot of different ways and we shouldn’t be convinced other wise.

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Her affirmations helped me to realize that one of my favorite things about myself is my intelligence and not intelligence that you gain from books or school, but through experience. I have not only had to deal with physical illness, but also mental. When I was younger, I was diagnosed with Post Traumatic Stress Disorder (PTSD). It gave me insight on how people view themselves. I found that the best thing you can do is learn about people and how they feel, take time to hear their story. It has given me an understanding and awareness, something I believe all people should have. Though I love the ability to be able to experience another human beings life through understanding, I myself have a hard time talking about my illnesses. I have 13 conditions,

Ehlers Danlos syndrome type 3

Dysautonomia

Mixed Connective Tissue Disease ( Lupus/ Sjogrens overlap)

Spina Bifida Occulta

Spondylothesis

Hip Dysplasia

Interstitial Cystitis

Hydronephrosis

Iron Deficiency Anemia

Mast Cell Activation Disorder

Small Fiber Peripheral Neuropathy

Postural Orthostatic Tachcardia

IBS – Diarrhea Predominant

I get it. It’s not like I can say “I have asthma” or “Yes, I have diabetes.” Those are more simple conditions to spell. When I can see beads of sweat form on the nurse’s brow as they hold their clipboards close to their chest, trying to hide their inability to spell my conditions, it’s one of the things that make me laugh during my visits.

All my conditions fall under the umbrella term “Chronically Ill”. I was born on May 24, 1996 with Ehlers Danlos Syndrome Type 3. There are six different types, in my case, it means I am hyper mobile and hyper flexible i.e. my connective tissue is not supported because my body doesn’t naturally produce collagen. Often, when people think of collagen, they think of the beauty aspect of it; your hair, your nails, and your skin. For me, it means connective tissue that holds all of your bones in place with your tendons.

Collagen is the body’s glue, and my pieces don’t ever seem to stick.

When puberty hits, a girl’s body begins to form into a more womanly shape. One of the things that begin to expand are her hips, and because I lack collagen, this is where my pain settled in and made its home. I underwent six surgeries, three on each hip, before they realized they were just making things worse. No matter how many surgeries I received, nothing worked. The doctors discovered that I also had Hip Dysplasia.SONY DSC

It was hard to experience health issues as a twelve year old girl going through puberty. Not only was I at the age of trying to figure out who I was in the midst of middle school social pressures, but I was constantly in and out of the hospital. I was learning the basics of math and English and medical terms on the side. In the eighth grade, I switched to a cane, and it would be pretty much embarrassing for any kid in school, so I got teased for it. People would call me cripple, they’d hit my crutches or cane causing me to fall. The impact of the fall would dislocate my hip once more, setting me back a year of healing.

In college, a lot of new diagnoses were appearing. Everything was hard to handle at once. A couple of weeks passed since I started school, and I had already been diagnosed with Pots, Dysautonomia, and then Lupus. The list went on. It’s hard sometimes to accept the fact that one day you’re okay, and the next you’re not. Can you imagine not being able to use the toilet, get dressed, or shower on your own — that someone had to be there to help you constantly? I had to exercise a lot of self-control in willingly giving up my independence. I need my mother to help me with all these simple actions that I should be able to do on my own.

“No one will understand,” I used to think to myself until, I set out to Instagram with curious fingers. The need to know if it was possible that someone, anyone, could be out in the world just like me drove me. #Chronicallyfabulous was created by Kat Crawford. Kat is a young woman who is also a part of the chronically ill community. She created a unique motivational hashtag and has her own line of hypoallergenic clothing to keep the positive affirmations alive in the community. Other hostages like #Hospital Glam and #Pots were created by others with similar  intentions. Finding this community has helped me so much because I have been able to connect and help so many people. It’s a place for us to relay information to one another and give advice on how to handle certain situations. It’s the few occasions where social media doesn’t have a negative connotation.

A lot of people in the community, care about how they look. I assume it has a lot to do with being viewed as “normal” and that’s understandable. Young girls are going through a time of self realization. Puberty and trying to fit in at school while being chronically sick is not easy. They want to know how to do their make-up, and be like all the other girls. Which is fine if you’re trying to look a certain way, but it’s not always easy for someone who is sick. Beauty even in its smallest form, creates a huge impact. People who are chronically ill do not get to shower everyday because showering can cause pain, exhaustion, or have you lay in bed for hours because you might just pass out. The chronic community tries to find easier methods in beauty to help one another. A lot of girls end up cutting their hair short because they don’t have the strength to manage it. To achieve what we want, we have to find other ways to look or feel “presentable,” what ever that may mean for us individually. Girls who have feeding tubes try to find really pretty decorative tape to stick the tubes to their face or pads for the feeding tubes.SONY DSC
These efforts that we put in to just feel “normal” is to obliterate the view that has been created for sick people. We must all be pale, dull, look like we’re dying at any moment, right? But we don’t. We go to the hospital on a regular basis, whether it be for a  checkup or to get management. When we go, we go looking our best because what difference is it going to make? I don’t have to look sick to be sick. I can go to a hospital with a level 8 pain and still look fabulous. It’s not going to make the pain feel any different, it’s just going to make me feel better about myself. If things get bad we go at our worst, but it’s the small things sometimes that helps.

There’s another hashtag called faces of chronic illness where girls post pictures at their worst in the hospital, and then they post a picture where they look completely glammed up. It’s to show society that you can be sick without looking sick. One of the most common things we hear is,

“But you don’t look sick?, You’re too young to be sick,How could you be so beautiful and be sick.”

Most of the time, people mean no harm when they say these things, but its time to understand that for the most part it’s not appropriate.

I want to feel beautiful all the time.

How could you say to me that I’m too beautiful to be sick? What does that even mean? Are sick people not supposed to be beautiful too?

Forget makeup for a moment, getting our hair done, mani-pedis, the perfect body, and what everyone will think. Forget the superficial things that sometimes cloud our vision to what truly matters: our health and our happiness. No one understands how easy it is to take these two things for granted. I have known women who have nearly killed themselves for an image. I have grown up with girls whose daily mantras were “What if they won’t like this?” It is time we network to younger girls that beauty is not about what you see in magazines, or what you’re told is beautiful in the eyes of another. You are beautiful, you are healthy, you are courageous, you are smart, and you are everything good in this world.

amy

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