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    • #15461
      Bailey Vincent
      Keymaster

      I wrote a column this week about weight gain in the CF community (especially with the release of gene moderators); in particular, how little education we have on the subject. Personally, I wish we discussed “why” gain has occurred (for example, sometimes mine is ascites and water weight from IVS… other times, muscle and yummy nutrition), versus going off numbers and BMI alone.

      Do you think we should reexamine the use of BMI in the medical world?

      I’ve always weighed “more” than people think I weigh (from looking at me), for example, and thus function at different weight levels differently than the scale might say. I know many tall or muscular pals weigh more than their outdated BMI might permit, so, personally, I feel this should be shifted scientifically in some way.

      Additionally, I wish we had more psychological support regarding body image. I know for many female patients, the gender divide is striking societally and takes a toll. For example, some of our male friends are applauded for gaining weight online (“You look so sexy!”) while women get comments like “It’s tough to feel puffy” or “Can you get your moon face to go down?” The dysmorphic component of an ever-changing body, as well as the double-standard and divergence, has hurt a lot of my near and dear friends over time.

      Do you wish we had more clinic support for weight gain, dysmorphia or body image?

    • #15464
      Jenny Livingston
      Keymaster

      This…. is a heavy subject (no pun intended). I’ve struggled so much with my own weight gain over the last several years! As a teen and young adult, I was always praised for being thin. I regularly heard comments like, “I wish I were as small as you” or “It’d be so nice to eat whatever you want and not gain weight.” Honestly, I loved these comments! Of course I did – I was raised in a society that taught me worth as a woman was directly tied to my physical appearance. (Gross, right?!)

      As my body started to change, I began really struggling with body image. I’ve been so fortunate to have a CF dietician who is incredibly empathetic and understanding. In fact, a couple other members of my CF team have also have initiated helpful discussions about body image and mental health in regard to my changing body. And I truly can’t recall a single discussion in which we’ve talked about BMI. Our chats about weight are always centered on how I’m feeling about everything rather than the numbers. I’ve been so lucky to have a team willing to walk with me on this tricky journey!

      I’m actively unlearning a lot of internalized stigma and some days are still incredibly rough. But most of the time these days, I feel pretty dang comfy in this softer, jigglier body of mine. I even think my new cellulite is pretty cute!

      I’ve spoken with many other women in the community who aren’t as fortunate as I’ve been. They don’t seem to have the support of clinic staff and don’t feel comfortable discussing their complex feelings about this with their team. I can’t imagine how difficult that must be!

      Also, I do know a few men in the community who have struggled in similar ways! They didn’t “need” to gain weight and struggle with their changing bodies as well. I wonder if it’s even MORE difficult for them to talk about this, since we so often think of it as a problem faced by women exclusively.

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