What better topic could there be to write about in February than love?
Before I started writing this column, I asked what topics people might be interested in reading about. A few said love and relationships for someone living with a rare condition. So, this is what I will focus on.
Let’s start with the easier part: friendship (although I’m not saying friendship is always easy). I consider myself lucky, as I’ve never had trouble finding friends.
Romantic relationships, however, are different, at least for me. I’ve experienced what I think was real, profound love. Love that makes you feel secure, beautiful, strong, irresistible, understood, and truly happy. Maybe experiencing real love makes it harder to find love again later, because your standards are so high.
I had been lucky to receive mostly positive feedback about my openness and self-confidence about epidermolysis bullosa, and I had managed to bury the fear of being rejected because of it. I met several nice guys who didn’t seem to care, and I experienced special connections.
I believed that not thinking about my skin in the context of romantic relationships was the right thing to do. Then one day I met someone who changed my outlook. We only dated a short time. It was nice, and I would have enjoyed getting to know him better. But I think we just weren’t right for each other.
He admitted that he wasn’t sure if he could handle being with someone living with a rare condition, and he was afraid of hurting me, inside and out.
At first, I felt sad and disappointed and tried to explain myself, and then I became angry because I felt ashamed and hurt. I was handling my condition well and didn’t need someone else worrying about me.
Today I am grateful that this person had the guts to tell me how he felt. Nevertheless, after that experience, I began to doubt my encounters with men. I began to wonder if relationships didn’t work because of my condition. This part of myself, this fear of being rejected by someone because of something I can’t change, has been present every day of my life. It was just buried deep inside until it finally surfaced.
Do you know this feeling, when you slowly fall in love with someone and then suddenly are afraid to say or do something wrong? That’s the point when you start to not be yourself anymore, and when you overthink every word.
While I know how to play the role of being comfortable talking about my skin, something has changed. This is because one of my biggest fears — one I hadn’t even realized I had — came true. It slowed down my process. On the other hand, maybe it helped me to grow.
I realized that I had feared being rejected and reduced to only my condition. I feared not being good enough because of epidermolysis bullosa. It was important for me to realize that I had this fear. And as I started to think about it, I began talking about it and writing about it. I think that was the start of conquering it.
I began working on myself. It will be a long journey, but I am confident I will get there.
One quote I like is by the TV character Carrie Bradshaw: “Don’t forget to fall in love with yourself first.”
In the process of writing this column, and after talking to a few of my dearest friends, I concluded that this quote is only partially true. I believe that you won’t always feel that you’re in love with yourself. There will be times when you feel unhappy or uncomfortable, and that is OK. You just have to love and respect yourself enough to be open to receiving love from others, and to know that you are worthy of being loved.
Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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