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  • Photos of Yourself Before/After PF

    Posted by christie on May 16, 2022 at 5:00 am

    A recent column on our sister site Pulmonary Hypertension News discusses one mom’s journey to understand her son’s feelings about photos. Colleen Steele’s son Cullen was diagnosed with PH as a child and had a heart-and-lung transplant as a young teen. Cullen hates to look at photos of himself from when he was sick. As a parent to a child with a terminal illness, Colleen was very good at documenting Cullen’s young life in photographs. She was hyper-aware of the value of photos of her son, in case he did not receive his lifesaving transplant.

    Self-image is something a lot of chronically ill people struggle with. Whether it’s due to changes in appearance because of illness, medication side effects, or visual reminders like a canula or surgery scars, living with a rare disease can make it hard to feel at home in our bodies.

    How do you feel when you see photos of yourself with PF? Do you struggle with self-love, and acceptance as your body changes? How do you treat yourself kindly when critical thoughts creep in?

    christie replied 1 year, 9 months ago 2 Members · 2 Replies
  • 2 Replies
  • wendy-dirks

    May 16, 2022 at 10:26 am

    Hi, Christie –

    One of the consequences of my illness has been putting on a tremendous amount of weight as my ability to move decreased. I grew up in a culture that despises fat people and I had to spend a lot of time learning to love and accept myself as a fat woman after being thin and fit all my adult life. I discovered Heath at Every Size and did a Body Love course with Ragen Chastain, a fat activist and blogger. These steps allowed me to accept a nasal cannula with ease. It’s just a part of my face now! I have had people on social media make fun of it when they didn’t like something I said (usually about science). I can’t imagine anything more ridiculous than trying to win a losing argument by resorting to personal insults, but that’s the nature of social media. I don’t mind seeing myself in photos at all and in fact, during my recent hospital stays I posted pictures of me with various types of masks as my oxygen needs decreased.

  • Jeff Taylor-Jackson

    May 17, 2022 at 9:18 am

    Hi Wendy,

    Reading your post reminds me of the Mel Brooks film Blazing Saddles. “These are simple farm folk, you know……..morons.”

    That what I think of when there are people who resort to personal insults when they are losing an argument.

    I am of the opinion (rightly or wrongly) that I have not go that long to go, so I dont really care what I say, (as long as its not a personal insult) to anyone. If they dont like the way I look, dress or the football team I support, it’s their problem not mine.

    We all have bigger problems to deal with than care what other people think about our appearance!

    In answer to the question though, I too have put some timber on since diagnosis. Not too much, but certainly noticeable in recent photo’s. But its who I am now and what I am dealing with at this moment in time that those photos represent, whether I like it or not!

    Best wishes


  • christie

    May 18, 2022 at 12:43 am

    @wendy-dirks and @cleavergreene I’m happy to see you both celebrating the bodies you’re in right now and accepting your weight fluctuations and other changes. That’s really encouraging! I agree that insults about other people’s appearance are a pretty ridiculous and low form of comeback. Especially if the insult is directed at a medical device like a canula… I mean, how insensitive! Ugh!

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