Learning to Love the Skin I'm In With Ehlers-Danlos Syndrome
I’ll start out by saying I was not always comfortable or accepting of my disorder, Ehlers-Danlos syndrome, or the effects it has on my everyday life. Growing up, my family did not think there was anything specifically wrong with me, especially with it being branded as an invisible illness. I was consistently pushed to the sidelines when trying to cope and learn about the effects of Ehlers and my future with it. I was diagnosed around the age of 10 but had noticed my skin as early as the age of 7.
My sagging skin was my biggest insecurity, amongst other side effects. I would later learn this was due to the rarity of my type. As I got older, my discrepancies started to show more and more. The majority of people who had noticed assumed I had gone through some type of weight flux, which resulted in my “stretchy skin.”
Again, I was not always comfortable with my Ehlers. I more often found myself hurting my body rather than helping it, both mentally and physically. Around the age of 23 I had started a relationship before fully acknowledging my disorder. My insecurities with Ehlers created a major barrier, which ultimately led the relationship to end.
This would be one of my greatest lessons ever learned. I just didn’t know it yet.
Upon serious self-evaluation, I realized my insecurities caused me to lack any confidence, which had an impact on all of my social and personal relationships. I observed that hating certain parts of myself and body triggered my unhealthy mindset, which others sensed as well. This outlook transferred into a majority of my friendships/relationships, which then made them incapable of reaching their full potential.
I promised myself from then on I was going to be true to myself, love my body, love my disorder and most importantly, love myself.
I looked to photography as a way to pursue and nurture my new mindset. After acknowledging the parts of myself I hated and shunned, my mentality slowly began to change, and the beauty within my flaws slowly began to appear. Not only did I recognize change within myself, but I started to think more and more about photography and art. How could I use my story and revelation to help others?
My cousin, Yasmin, and best friend, Briana Berglund, were the ones who really helped me (as well as other amazing close friends and family). I informed my friends and family of my decision to raise awareness for EDS and start my journey modeling with my disorder in the fashion industry. I also decided to share this with on personal social media accounts as well.
My goal is to shed light on the unhealthy mindsets we currently have within the fashion and modeling industry today. I believe the scars and discrepancies we have are reminders to the world of what we have been through as individuals. We should not be urged to “cover them up” or “remove them” but instead glorify them!
I aim to break society’s transparent barriers of perfection. Barriers that subliminally tell us all to be perfect in all aspects of life, work, social and personal interactions. “Be this skinny and you’ll be happy,” “Buy this and you’ll be happy,” “Look this way and you’ll be happy.” Really? It is the imperfection that makes us perfect and is where true beauty lies. A reminder we all need: love your body, love yourself, be gentle with your body, be gentle with yourself. We are our own real life warriors. Our bodies tell a story that no one else has, a literal vessel of the struggle we as individuals have gone through – a vessel to be praised, not shunned.
My mission is to show the world my own imperfections to aid others on the journey to self-love. Real beauty lies within ourselves. The beauty only seen on the outside doesn’t count, but what matters most is on the inside. By reinforcing the mindset that our imperfections are real and beautiful, I hope to lessen the journey and struggle of others on the road to self-love.
I hope to be an inspiration to others and open individuals’ eyes to the true beauty within themselves.
When I started my journey I knew I was struggling and knew I needed someone to help me break through. Yasmin was with me. I stated how unhappy I was, how I wanted to try to love myself and learn about my disorder – I just didn’t know where to start. Her statement to me changed my attitude. She responded, “This is what I have been waiting to hear for a very long time. Your disorder is beautiful. It’s what makes you, you. Only you can change your mindset and love yourself.” I had heard statements like this before, but for the first time ever, I didn’t doubt her.
This is when the Love Your Lines campaign presented itself. This campaign focuses on praising imperfections. From stretch marks to scars, from discrepancies to birthmarks – anything. It is here women are able to submit a picture of their imperfections and a story of their journey. My cousin urged me to submit mine.
On September 16, 2015, the #LoveYourLines campaign published my story on their social media page, and that is a day I’ll never forget.
It was here my vision of myself, my body and my disorder changed forever, and I can honestly say I am the happiest I have ever been in my life.
From the beautiful individuals who offered their kind words on my post to numerous women reaching out and declaring the beauty I had revealed to them, it was a spectacular experience. I felt like a whole new person. I couldn’t understand how I had hated myself, my body and my disorder for so long. With every opportunity I noticed my strength, growth and transformed perspective.
Now, more than ever, I am confident with who I am and with my disorder. I have made it my mission to raise awareness for Ehlers through photography in hopes of making an impact. I am not ashamed, nor do I try to hide it anymore. I may have a disorder, and yes, my disorder is a part of me, but I wouldn’t change it for the world. My physical discrepancies are gentle reminders of the fighter I am. My lines make me, me. Each line holds beauty, and is beautiful in its own way. No one else carries the exact lines I have, and this is what I consider to be truly beautiful.
I believe deep down that God put me on this journey for a reason. I will not stop until my voice and the voices of the EDS community are heard, and I will continue in my efforts to change society’s visions of perfection within our fashion industries in the U.S. and around the world.
I aim to be one of the first recognized models with Ehlers-Danlos.
Wear your stripes with pride, my loves. Our community may be small, but we are all here to support one another. I wish you a blessed day filled with love and many blessings. Thank you for taking the time to read my journey, and I hope to meet you all one day. #ZebraWarriorsUnite
We want to hear your story. Become a Mighty contributor here.