Social media. It permeates every facet of modern society. There are long lists of the positives and negatives of social media. There are pages that inspire you and some that disgust you. In between those two extremes are profiles that seem – superficially -- relatively innocent. However, it is the wide array of “middle-of-the-pack” social media accounts that tend to have the most direct effect on my mental health in regard to cystic fibrosis.
“Middle-of-the-pack” accounts are what typically fill my Instagram and Facebook feeds (as well as TikTok, Twitter, Snapchat) – they are people I know from grade school to college, close and distant relatives, people I have met at different CF and non-CF events, acquaintances, and even a few people I never really liked. I scroll through accomplishments, travel, career advancements, and major life milestones up and down my feed for what seems like an eternity. While I’ve spent the past six years trying to survive cystic fibrosis, everyone else has surpassed me.
Sometimes, I think to myself that I am so far behind my peers in every possible way. My life is not supposed to be like this, and I was put on this earth to achieve so much more than what I have.
Something that increased these feelings for me was being on Trikafta®. For the first time in probably 10 years, I felt good again. I had energy! I was not coughing once a minute, every minute like clockwork. My lung function went up, my fingers were no longer clubbed, and I was in the hospital less. I am so grateful that Trikafta gave me some of my life back. However, the reality of my particular situation is I cannot go back to work just yet – I am still hospitalized at least three times a year, and I still can’t be as active as I would like to be without becoming extremely exhausted.
Now that I have shared a little about my personal experience, think about yours. Whether you are a CF patient; are the parent, sibling, caregiver, or provider to someone with CF; or someone else entirely, think about how social media makes you feel about cystic fibrosis and the accomplishments, small victories, and even failures that come along with it. Have some thoughts flowing? Good! Let me tell you a little bit about how I learned to process my own feelings about this.
One of the most important forms of self-care I advocate for is therapy. When I was ready, I organized my thoughts on this topic and brought them to my therapist. I usually do this by handwriting lists to bring in, and I usually get a good laugh from my PsyD! I was able to process a lot of the emotions I was feeling – anger, resentment, jealousy, frustration, shame. I was then able to highlight more victories and accomplishments than I thought I had.
I was so focused on everyone else, I lost focus of myself.
After that, the two main “strategies” I learned that helped me the most are positive affirmations and being kind to myself. I usually recite my favorite affirmations to myself in my head. Two of my favorites are, “I am doing my best today,” and “I will not worry about things I cannot control.” If I am having a bad day, I’ll write them down in a journal or on Post-it® Notes that I leave in places I will see throughout the day.
Being kind to myself is a bit harder. I have overcome many obstacles unique to my CF story, and chances are people who see my social media think that’s pretty awesome. I constantly need to remind myself that even though I might not be where I want to be, I am where I’m supposed to be – that means I am alive, I have worked very hard to get here, and I am proud of that.
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