I am finally back at BioNews and writing as “The Girl with the Butterfly Tattoo.” I can’t tell you how much I’ve missed writing.
Due to the coronavirus and the craziness that was — well, still is — going on in the world, I had to stop writing my column for a while. This was unexpected, especially for someone like me who always plans ahead and loves to be prepared for every circumstance.
However, certain things in life are unpredictable. I had to rethink and learn to accept this particular situation.
That made me think about other moments I could not foresee, especially living with epidermolysis bullosa, a rare genetic skin condition. (You can read more about it in in my recent columns, such as this one.) It makes my skin blister quickly, and I have (beautiful) scars all over my body.
I finally learned to love my scars because they are a part of me. But it is still hard to always be confident about them …
Especially during summer
One day this August, it was 34 degrees Celsius (93.2 F) in Vienna, Austria, where I live. I wanted to wear something light and short to avoid sweating the whole day. But I didn’t feel confident showing my skin all day. I was afraid to leave the house, even though I felt OK. What if my mood changed and I had to cope with stares while unable to hide my skin for the rest of the day?
I decided to wear that beautiful dress anyway and try to be my confident self. It worked. I felt good.
Right after leaving the house, I shared the thoughts above with my Instagram community. I got so much positive feedback. People started sharing their thoughts and insecurities with me, which built me up so much and showed me that many of us can relate to this. All the encouraging messages helped me feel even better.
At an appointment shortly after, a woman saw my legs and said, “Oh my God, that looks bad!”
I decided to ignore it. Fortunately, I didn’t feel less confident, but I also didn’t feel like acknowledging her comment in any way. It made me a little angry, because it is never the place of others to comment on our bodies or tell us how it must feel being us. You can read more of my thoughts on that topic in this column.
This experience of talking about what I felt was so special for me because so many people opened up in return. They shared their insecurities and their stories, whether they have a condition or not.
This is what I want to achieve: making people rethink, accept, and love themselves, and encouraging them to be open to others and judge less. We should appreciate uniqueness.
Appreciation starts with yourself
That’s the hardest part, but it gets better every time you work on it. Our insecurities sometimes hide and sometimes arise. Like unforeseen situations, they can be difficult to cope with at first. But once we accept them, we can use our newfound strength for our own good.
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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