After Trikafta, I’m Struggling to Redefine My Online Persona

Wendy Caroline avatar

by Wendy Caroline |

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Social media is a strange and fickle web of predetermined, or accidental, personas.

I used to be very active on social media, with the intent of spreading awareness of cystic fibrosis. It was easy to do because it was taking over my life. There was never a shortage of doctors’ appointments, test results, hospitalizations, and new treatments to post about. Blog posts were easy to write, given my constant health updates.

Now that my days aren’t as consumed by medical drama, I have a hard time finding my online persona. Don’t get me wrong. I have several hobbies and interests outside of cystic fibrosis (too many if you ask my friends and family). It’s more a matter of social media valuing those that have profound thoughts and stories. I was valued for my cystic fibrosis advocacy.

There is still advocacy work to be done to provide adequate treatment and resources to everyone with CF. It would be silly to ignore that. However, my piece in that puzzle looks different now. I have benefited from recent therapies, while access and compatibility have denied the same privilege to others.

There are certainly parts of my health that I struggle with, even after Trikafta (and some as the result of Trikafta). However, they seem inconsequential compared with what I was experiencing before.

So, here I sit as a dog trainer, a world traveler, a food lover, a writer, a photography hobbyist, and a musician, not knowing which niche to foster my persona in. I wonder: Does it even matter? Cystic fibrosis advocacy felt like a mission. There was a goal. Sharing my hobbies and life with the world simply for the sake of existing online seems so arbitrary.

The ironic part is that I love following other accounts where people post about their everyday lives. So why should I feel differently about myself? Perhaps there’s fear that the change won’t be accepted, or maybe I need time to wrestle with the change myself. Until I figure it out, you can catch me sharing cute pictures of my dogs from time to time on their Instagram.

In the end, I feel like I’ve needed time to rediscover myself. Life-altering events will do that to a person. Between that and the pandemic, I have been fairly quiet on social media. I don’t have anything hugely profound to end this column with. It was more of a therapeutic stream of thoughts. I do hope that it helps anyone who is struggling to figure out their online presence post-Trikafta.

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Note: Cystic Fibrosis News 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 Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Gisele F Lapointe avatar

Gisele F Lapointe

I so wish my daughter had been around to experiment with Trikafta. Maybe she would still be around, but she passed away at the age of 43 after a lobar transplant.
I wish you well. Enjoy your life.

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claude avatar

claude

still no Trikafta in Canada. Government has not approved it for use. Seems criminal?

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Paul & Debbie avatar

Paul & Debbie

This is a wise decision to take time to rediscover yourself. Maybe you will find out that who you really are, has nothing to do with finding a persona. It is not to be found in any identification with the body, a disease, a mission or the world outside. Try not to find another persona, any identification will wear out after a while and you will not find yourself in it. Go deeper. You are much more than the sumtotal of your thoughts, feelings, experiences and conditioning. Now you are no longer distracted by the daily thoughts of cf, try to find out who you really are. There is so much freedom and happiness to be found in that process. Best of luck!

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