Living with EDS – Sara’s Classical Ehlers-Danlos syndrome Story

“There’s not really a specific place to start, so we’ll just jump right in.

I’ll start out by saying, I was not always comfortable or accepting of my disorder, and the effects it had on my everyday life.

I had been diagnosed around the age of 10, but had noticed my skin as early as the age of 7 or 8. Once I had been diagnosed, one of my sisters had also been diagnosed with Diabetes. Given this was in the 00’s and the lack of information we had was not nearly what it is now, my sister’s circumstance took the upper hand within my family.

This was fine, as at the time I was not noticing anything super peculiar, or out of the “norm” pertaining to my EDS.

As I started to get older, I had heard stories of other individuals suffering from EDS, and having barely any physical discrepancies, but impacting the inside of us more than the outside. This to me was shocking, as my type was not “hidden” or “invisible” but completely opposite, being more than visible, and very evident. My outside discrepancies would have included the easy bruising, soft skin, scarring, and the “stretchy skin”.

The majority of people who had noticed my outside discrepancies assumed I had gone through some type of weight flux growing up, which had resulted in my “stretchy skin”.

As I got older, I started to notice my outside discrepancies were worsening, and my joints and ligaments began to have more difficulty coping with everyday activities as well.

It wasn’t until senior year, that I really started to have pain problems. My parents took me to a hospital nearby, and that’s where I was told I had herniated discs in my back. I started to “put two and two together.” Finally linking the two complications together, with the possible notion that my EDS had something to do with these discs. The doctors had offered surgery, and given I had had friends who had undergone back surgery before, I knew that this was not the best option for me, especially given my young age.

The discs caused immense pain, and really impacted my senior year, causing me to do credit recovery in order to graduate on time. I began to train my body to cope with the pain, not using therapy or medications to help.

As stated in the opening, I was not always comfortable or accepting of my disorder. It wasn’t until about 22-23 that I really started to understand the toll this specific action or outlook took in my life.

When I was 23, I started a new relationship. I like to call it my first “adult” relationship.. haha. Again, I tried to hide my disorder from the get go. We saw each other for about 11 months before it ended. Once it had ended I found out, from a mutual friend, that my ex-partner had undergone treatment for cancer, prior to us dating.

Over the next few weeks following that specific conversation, I still couldn’t come to grips with what I had heard. I was caught in this internal fight in my head between, the situations, the actions I had taken, his actions, and ultimately who was in the right. After a long and gruesome self-assessment, I had come to the grand realization that after everything, from the beginning of the relationship, to the end, I had no one to blame but, myself.

Let’s break this down a little bit. So, how did I manage to put this all on myself, do you ask? Well, once I learned my ex-partner had been in treatment, the first difficult part to work through was, why he didn’t inform me of this? Or really, why he felt that he couldn’t be open or talk about it with me?

One of the first things I noticed was how upset I was about this scenario, when in all reality, I really shouldn’t I be upset at all. By showing this emotion, and realizing it, it caused me to really look at myself, and my own actions I had displayed. It’s not like I had been open with him about my Ehlers-Danlos. I chose to hide it, thinking he wouldn’t be able to see, it or want to know anything about it.

The second hard part was actually admitting I was not happy with my body and the effects Ehlers-Danlos had on it. My lack of self-confidence had led to other unhealthy mindsets and habits. By choosing to not embrace my disorder and imperfections, I put more effort into hiding it, and it showed.

If you don’t love yourself, how do you expect to love someone else? Loving myself was not something I had fully grasped at this time.

After thinking through this, I came to the conclusion that this was more on my shoulders than his. Once I had fully come to grips with this reality, I was sick to my stomach with myself. By choosing to not be open with him, myself, my disorder, it caused a blockade in our relationship. This blockade was like a ticking time bomb, just waiting to explode. Once the ticking clock started, it couldn’t be stopped, and once the time ran out, BOOOM, it was gone… 

The blockade incorporated everything from honesty and not being open, to my personality and submissiveness, and even all around shame and embarrassment. This, as a whole, ultimately was the downfall of the relationship, or reasoning for ending the relationship altogether.

After my self-assessment I really tried to hone in on myself, and what I needed to do to properly heal. I promised myself then and there, I would be true to who I was, and love my body, my disorder, and most importantly, myself. It was time to do the opposite of what I was doing. I needed to learn about Ehlers-Danlos, and connect with fellow individuals who were also struggling.

As my mind slowly started to open to this new concept, my cousin was one who had really stood by my side (as well as my uuuhhh-mazingg close friends and family). I had decided to share my story and future venture (not knowing what it was quite yet), with my own personal social media pages, informing my friends and family of my decisions to raise awareness for EDS, and start to make my mark in the fashion industry, as I have always had a love for fashion and photography.  

My cousin and I were very close, since childhood. Both of us were very similar in some ways and very different in others.

I’ll always remember one of the first days we had started talking about my disorder. I knew I was struggling, and really needed someone to help break through this rough time. I had relayed what I had assessed about myself, and the previous relationship, and was informing her of my efforts to really start loving myself and my disorder. She had then made the statement of, “this is what I have been waiting to hear from you for a very long time. Your disorder is beautiful. It’s what makes you, you.” And in that moment something inside me changed, for the first time ever, I didn’t doubt her statement.

She then proceeded to help me with my morphed image of myself. We had started with random ideas on how we thought we could alter this. That’s when the Love Your Lines campaign first came up (@loveyourlines). This campaign focuses on praising imperfections. From stretch marks to scars, to discrepancies and birthmarks, anything. It was here that women were able to submit a picture of their lines, and a story of their journey. My cousin urged me to submit my story.

Within a 2-week period we set up a rickety photo shoot, bought a tri-pod for my phone, and away we went. I was beyond nervous, but after a while realized, it was only my cousin with me :). She had helped me with lighting, certain poses, and putting up props. It was about a 2- hour shoot, and took me about 3 hours writing up my article for the photos. I submitted my story and photos, in August 2015, and with my fingers crossed, it was time for the waiting game.

Numerous other opportunities began to present themselves, right before my eyes! I had my first photographer reach out to me, and request to work with me. My cousin had also connected me with other individuals who really supported my ideas, and visions. All of these amazing opportunities slowly began to solidify my decision to start a venture within the fashion industry. 

Along with the ‘Love your lines’ campaign, I began to try to focus on my vision for myself, and what I wanted to accomplish. I decided that I would dedicate a large part of my time to raising awareness for EDS, and connecting with other EDS warriors. Urging those individuals to be proud of their disorder, and to wear their lines/marks/stripes with pride.

By showing my own discrepancies, I hoped to help other women and men who had struggled with their body image, and societies morphed visions. “The lines we bear tell a story of who we are, and what we have been through. Society has morphed our minds into thinking that we all need to be perfect. Whether that be size, height, weight, color hair, eyes, etc.” I made it my mission to try to alter this.

I also had begun to do research on modeling with disorders throughout the U.S. This is where the #inmyskiniwin came into play. I had come across the vitiligo movement that was taking the U.S and Europe by storm. Winnie Harlow and Shaun D. Ross are two major supporters of this.

Vitiligo is a condition in which the pigment is lost from areas of the skin, causing whitish patches, often with no clear cause. *Source Google.com Definition*

I began to pair myself with these movements, along with other positive body image social medias, in hopes to become one of the first Ehlers-Danlos models. (#effyourbeautystandards, #inmyskiniwin #ehlersdanlosawareness being the top Instagram hashtags)

Soon, with all the new opportunities, and everything going on, I began to push my submission to ‘Love your lines’ to the back of my mind, and began to focus on my next step. What was my next step? I began looking for more abstract modeling. My cousin had turned me onto UGLY modeling management, where they focus on more abstract looks. I submitted my resume as well as a submission to MILK model management, just to see what could happen. With doing that, I also signed up for a web community called researchmatch.org. This site linked researchers and people who were looking to expand their knowledge by volunteering for studies to help people in the future.

In the middle of figuring that out, I received the email I will never forget.

On September 16, 2015, the ‘Love your lines’ campaign published my story on their social media page. In an instant I was in complete tears of joy, not believing that this had actually happened.

It was then my vision of myself, and my disorder, changed forever.

From the beautiful individuals that offered their kind words, to numerous women reaching out and declaring the beauty I had revealed to them. With all the amazing feedback, it was almost overwhelming. I couldn’t understand how I had hated myself, my body, and my disorder for so long. I felt like a whole new person.

“When you change your mindset, everything changes.” The way you present yourself to others, the way you carry yourself, the things you notice, the way you speak and what you speak about, everything.

My family and friends couldn’t help but praise me for the huge step I had taken, not for anyone else, but for myself.

With every one of these amazing opportunities, I noticed my strength, growth, and how different my perspective had become. A year ago I was a completely different person. Not ever wanting to open up, not only about my EDS, but in general. Weakness was not allowed in my book, and I associated EDS with being weak.

But now, more than ever, I am confident with who I am, and the disorder I have. I may have a disorder, and yes my disorder is a part of me, but I am not my disorder. My physical discrepancies remind me of this, and the warrior I am. My lines make me, me. Each line is beautiful in its own way, no one else bears the exact lines I have or their pattern.

I will no longer let my disorder negatively affect my life, and know deep down, God gave me this journey for a reason, and he wouldn’t set me up for anything I couldn’t handle. I will not stop until my voice, and the voices of our EDS community, are heard, and will continue in my efforts of changing society’s visions of perfection.

Wear your stripes with pride my loves, and know that our community may be small, but we are all here to support one another. 

I wish you a blessed day filled with love and blessings. Thank you for taking the time to read my journey, and I hope to meet you all one day. <3″

– Sara Geurts
Minneapolis, Minnesota
‘Loving MY Skin’ – Written for Strength/Flexibility/Health/EDS on 4/27/2016. Published with permission.

Read more about Sara’s story and about Classical Ehlers-Danlos syndrome on EDS Wellness ‘#EFFYourBeautyStandards Sara Geurts – Living with Classical Ehlers-Danlos syndrome cEDS)’

Sara’s story on The Mighty – https://themighty.com/2016/12/self-acceptance-model-ehlers-danlos-syndrome/