Schmetterlingclara – “Life has so much to offer if you let yourself get involved”

1. You are very active on Instagram and take your followers into your everyday life, how did you come to this?
   • Clara: As a teenager, I actually only consumed Instagram myself and I came across a few accounts where people affected by the disease talked about their illnesses. So I thought I could do the same and founded my account @schmetterlingclara in 2018. At first, I did not dare to speak directly to the camera or really say anything private about myself. It was not until spring 2021 that I jumped over my own shadow and posted a personal story. And then the whole thing started rolling. I was allowed to introduce myself and my story on various other Instagram accounts and as a result, more and more people became aware of me. Then one day, when I posted (in my eyes totally embarrassing) dance reel which went viral, the number of my subscribers skyrocketed. Since then, new followers have been coming in all the time. I post what I think is important so that more people learn about my condition and so that they can better understand those who are affected by my condition, but also those affected by other conditions/disabilities, and see life from a different perspective. But I also like to respond to the wishes of my followers and answer questions, because as an outsider you often do not know all things.
2. You also do educational work on Instagram about your disease (Epidermolysis Bullosa), how important is that to you?
   • Clara: This has become very important to me. People often stare at me on the street just because I “look different”. People whisper behind my back and make wild assumptions about what I might have. Many also keep their distance and pull their children away because they think I am contagious. And still others approach me and want to sell me their “healing water” or invite me to their sect because they believe that God and/or Jesus could heal me. But I also have to explain myself and my illness to doctors and carers again and again, because even in the medical field, most people do not know much about my illness. And that is exactly what I want to change. I would like to educate people about EB (Epidermolysis Bullosa), so that we sufferers are no longer constantly stared at and we do not have to explain ourselves over and over again. But I also want to campaign for issues such as disability in general, because there is still so much need for education and action there too. Because we can only achieve something if we are loud together. And I am already very well known within our “EB community” and I am now often recognised on the street.
3. What positive or negative experiences have you had on social media?
   • Clara: I have to say that I am very lucky in this area. I get 98% positive and kind comments and messages. But of course there are always the odd stupid comments. Partly out of ignorance, because many people come across a reel or a photo of me while browsing and have no idea what I have because they (like most people) have never heard of EB. But of course there are always stupid comments from people who do not want to or cannot accept my opinion and my point of view. It is not about “being right” or anything like that. One of the most popular topics is the word “disability”. Many other influencers and I hate it when people try to use the word “disabled” to describe us […]. I was born with this disease, I do not know any other way, but for most people it is hard to imagine. I am really grateful to have such a great community that supports me, that rejoices with me when nice things happen and also listens to me and understands when I am not feeling well. Many people are always worried when I do not post for a day. I could not have a better community because they are the ones who motivate me to keep going every day.
4. What is your support on days when you are not feeling good?
   • Clara: My family, my friends and the prospect of upcoming wonderful events. My family and friends are always there for me and support me as much as they can. Especially with my friend, who also has EB, I can have a good moan to her at any time and about anything because she understands me, as she often goes through the same things as I do. But my “healthy” friends are also always there for me. What helps me varies and also depends on the situation. Sometimes it helps me to go out, do something and distract myself. On other days, I do not want to see or hear anyone and then I just want to be alone and have some peace and quiet time. And sometimes it also helps me to talk about it. With my parents and/or with my friends. I often visualise my thoughts and feelings about on Instagram. Just as it comes into my head and then I get a lot of love messages that build me up again.
5. How would you like society to treat people with your or similar illnesses?
   • Clara: Firstly, I would like people to approach me with genuine interest and ask me directly if they have any questions. […] I wish to be treated as a fully-fledged person, because unfortunately many people still believe that you are also mentally limited if you are in a wheelchair and travelling with a companion. Of course, there are situations in which you have to be considerate of people with disabilities and/or chronic illnesses, but otherwise we want to be treated as normal as everyone else […].
6. How do you (always) manage to deal positively with your to deal with your illness in a positive way and draw strength from it?
   • Clara: Even though it may seem like it, but I am not always positive. There are a lot of days when I just think everything is rubbish. But it is true that I have a positive attitude to life from the ground up because I simply love life. I have lovely people around me who give me strength and I always try to do lots of things. So, that I always have something to look forward to. I have already achieved and experienced so much in my life, both positive and negative, and I just want to experience so much more, because life has so much to offer if you let yourself get involved.
7. In your opinion, what are the disadvantages of social media?
   • Clara: That the inhibition threshold is so low. You can simply create a profile with a false name and no picture and then post lots of nasty comments. Or that many people do not really think about how their message might be received by the other person, but simply type away quickly. Most of such people would not dare to say such mean things in person. I think, at least they would probably more carefully before saying or writing something.
8. On Instagram you do every now and then Q&A sessions. What is the strangest question you have been asked?
9. Clara: To be honest, I do not even know anymore, but many people always ask whether it is even possible for me to go to the toilet normally or whether I can have a relationship with my illness. These questions somehow seem to have a magical attraction. But I now simply ignore these and other private questions.
10. What advice would you give to people who suffer from this or similar illness? How do you manage stay positive and notb to desperate?
    • Clara: I know it is hard, but you have to learn to accept it, live with it and accept yourself as ‘you are’. Because you cannot change it. You should just try to make the best of it. Make the most of every good day and do as much as you can, have fun but also just do everyday things like any other “normal” person. School, work, studies, household chores etc. give you a regular, relatively normal daily routine. Because this also gives you a meaningful task. Otherwise, just LIVE life and enjoy it.
11. Unfortunately, there is still no cure for EB. Do you (still) hope that this will change at some point? And how frustrating is it to live with this fact?
    • Clara: I do not know any different. I have had the disease since my birth and I have accepted that there will be no cure, at least for me. I do believe that there will be cure at some point, but I think for newborns where the disease is not yet so advanced. However, research is still progressing and there are more and more ways to alleviate the symptoms and comorbidity such as skin cancer. As a result, life expectancy continues to increase and that is something that gives me hope.
12. You are not just a blogger on social media, you are also creative. How did you start painting or drawing?
13. Clara: I used to love drawing as a child, but then I did not really get round to it when I was a teenager due to stress at school and other hobbies. During the first lockdown I started drawing again and somehow it became more and more and some of my followers said that I could also sell my stuff. Somehow it turned out that today I mainly create handmade and digitally designed cards for every occasion (Christmas, birthday, Easter etc.) and sometimes sell them too.
14. What is your personal and most fervent wish?
15. Clara: I wish to get an assistance dog. Unfortunately, that is not possible at the moment for a number of (private) reasons.
16. If you had 3 wishes, what would you wish for?
    • Clara: 1. Healing, of course 2. An assistance dog and the opportunity to travel more easily and frequently.

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Dear Clara,

Thank you so much for being so honest and open in our interview. It was a pleasure to get to know you and to speak with you about a very important topic. I hope you enjoyed the interview as much as I did. Thank you for your time and your awareness work on social media. Personally, I wish you all the best and that you stay as positive as you are! Best, Aby

@For all visitors of my blog, you can find Clara on Instagram by clicking the link below!

https://www.instagram.com/schmetterlingclara/