Learning to Love Myself and My Scars From Multiple Hereditary Exostoses
One thing I can vividly remember through the brain fog is looking at my legs in the mirror before my first surgery. I was born with multiple hereditary exostoses. MHE is a rare bone disease characterized by pain, growth deformities and benign bone tumors that do have the chance of becoming malignant. My MHE is even rarer as I am the first in my family to have it. I stared at the golf ball poking out of my knee and I remember the excitement I felt knowing my legs were going to look smooth, look “normal.”
After enduring years and years of torment from my peers because of my tumors, I couldn’t wait to get rid of the deformities and the stares. I had 12 tumors removed from my legs and hand, and in their places six bright and fresh scars. I was hoping to lose the stares, but the scars just attracted more. I never used foundation on my face; instead I used it to poorly cover up my scars. The more surgeries, the more tumors taken out. The more tumors taken out, the more scars. The more scars, the more self-conscious I became. I was tormented for the hardest part of my life. Each passing year I became more and more depressed and isolated. My self-hatred led to years of emotionally abusive relationships. My depression got to the point where I was on 12 different antidepressants and anxiety meds per day. During that time, my stomach issues morphed into anorexia. I was at the lowest point of my life when I had my first MHE-related cancer scare.
At that point, I decided something had to change. “Change your thinking, change your world;” the most important step on the long, arduous road to recovery was to change the way I saw myself. Whenever I caught myself putting myself down, I would literally stop my inner monologue and force myself to say something positive about myself. I forced myself to face the thing I hated most about myself: my MHE.
When I looked at my scars, I forced myself to think back to my struggle, to how far I’ve come. To how many times I’ve re-learned how to walk. I forced it until it I learned to love the very things I used to hate. My scars are my battle wounds, my limp the proof I never give up. After 22 years of self-loathing I learned to love myself. I’m now 23 and I’m so proud to say my favorite scar is my two-foot-long one – one I would have despised this time three years ago. I no longer see my 11 chronic illnesses as a weakness, but rather my biggest source of motivation and strength.
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Marie D.L. is an artist, motivational speaker, journalist, digital creator, and Patient Advocate Leader that has been in the media for almost a decade, and uses her skills and expertise to help others grow their advocacy or organizations. She is the founder of R.A.R.E. by Marie D.L. and the creator of The R.A.R.E. Community. Through R.A.R.E. and The R.A.R.E. Community, she seeks to empower and spread visual representation of medical conditions. The R.A.R.E. Community is a social networking site she created that is separate from all other social media platforms, and is meant to connect warriors with a chronic, invisible, mental, or rare disease. She made The R.A.R.E. Community to be a safe place for patient advocate leaders who want to meet others with similar conditions in a positive environment, while keeping divisive and harmful topics not related to accessibility out. She offers graphic and other creative services, AV production, as well as professional collaborations as a way to put a name and face on disability. Her personal advocacy work focuses on sharing the experiences of a disabled woman in the media. You can find her on Instagram @r.a.r.e.advoc8, and join the R.A.R.E. Community at www.rareadvocatesrepresentingeveryone.com
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