It’s getting dark earlier, and it’s cold and gray where I live. The fallen leaves have lost their shades of yellow, red, and green, and are now a mélange of brown.
Mist coats the rooftops of Vienna, muting and calming the shining Christmas lights.
Change is coming.
I must accept that I should change my sneakers for winter boots and wear long socks again. I must accept that I have to change my baggy autumn pants for thicker jeans, and short-sleeved shirts for sweaters and jackets. That means I must accept that the season of having to cover every little wound on my body has arrived.
Every lesion on my body is caused by epidermolysis bullosa, a rare genetic skin condition. Even in winter, the smallest lesions must be covered because they can cause pain and stick to my clothing. It also is painful when my boots rub against my bare skin.
Winter also means my skin gets drier, so I need to moisturize even more than I usually do. It means I must be even more patient with my body and spend more time taking care of it.
It’s always summer in my heart.
I usually prefer summers to winter, likely because my body requires more time and care in the wintertime. That might be why it takes me longer to accept that it’s growing colder outside.
Winter slows me down and forces me to take a break and breathe. I think a lot, especially about the past.
When I was younger, I was ashamed of my scars and the bandages I had to wear. So, I used to always cover them, both in winter and in summer. It was a long journey to accepting myself.
Now that I’ve finally come to accept my body, my scars, and myself, I don’t want to stop wearing what makes me the happiest, which definitely are my summer clothes. Not only is it nicer for my soul, but also for my body, because it allows my skin to breathe.
Fear might also play a role. For example, I might be afraid of being “hidden” for many months, and then next spring, I’ll have to find the strength to “show” my true self again.
Maybe I’m scared I would get used to hiding myself again, and it would be even harder to show the world that I still have scars, that I still look differently. Maybe I’ll get used to not being stared at, and then next summer, I’ll have to be brave again.
Do you think it’s possible for us to lose our confidence? Or will we just go into hibernation, wake up a little groggy, and then spring will be in full bloom again?
I am 27 and I still wonder about this, over and over. Either way, I can’t wait to wear my favorite summer dresses again.
Note: Epidermolysis Bullosa Today 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 Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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