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    • #32031
      Christie Patient

      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?

    • #32065
      Wendy Dirks

      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.

    • #32073
      Jeff Taylor-Jackson

      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


    • #32097
      Christie Patient

      @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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