Coping | IBD | Ostomy
A few weeks ago, ostomies were given bad coverage on an English tv programme, a channel which regularly views IBD and ostomies in a bad light. With this began fellow ostomates posting pictures of themselves proudly showing their bags. Around the same time I read posts from friends and fellow ostomates who were badly stigmatized for having an ostomy. Some comments were enough to make your blood boil! This really upset me, so I began thinking of what could I do! I was always open about my disease and my ostomy, hoping that my openness might give someone hope and may begin to break down the stigma. I had always been inspired by Jess at Uncover Ostomy, the Girls With Guts gang, and the beautiful Alison Atkins.
A friend of mine is a photographer and has been doing work with other diseases and conditions with the hope to raise awareness. We got to talking and he was so moved by my videos, which are on Youtube (especially the video of Alison Atkins), he asked whether I would be willing to do a shoot. I agreed. I wanted to mix it up a bit, so along with the usual bag shots, I thought I would have bit of fun and have some shots with my bag covers. I’m not young and beautiful like the Girls With Guts, Jess Grossman, or Alison. I am also quite camera shy; I don’t take photos well!
It took a lot for me to get the photos taken, and even more to show them publicly. I knew there would be some negativity, and I was prepared, but what happened next I was not prepared for! I posted the album of photos in many groups and pages. The positive responses were amazing! But then 1 group totally shattered me! It was an IBD group. I was told I looked hideous, that my face was enough to scare anyone, let alone my bag, and then the comments came that I was horrific and that my photos were enough to scare anyone out of having surgery. This hurt the most as my whole reason for doing the shoot was to help people not scare them! My covers got attacked quite badly and I tried to defend myself by saying that not all the photos had covers and that was a personal thing that I did – I like to be funky and different.
The number of pictures got questioned as to why someone like me would do a photo shoot. The sad thing is, some of those who were commenting so negatively were fellow ostomates, maybe not comfortable with their own ostomies. I got told it would have been ok if the pictures didn’t show the bag as it would show that it couldn’t be seen. The shoot did contain photo’s like that but the point was to show I was loud and proud!
I stopped commenting on the feed as more and more comments on how disgusting I was came flooding in. Some defended me but were quickly shot down, friends even chimed in, only to be called hideous names, and in the end the album had over 250 comments, but not the sort of comments I had hoped! What did come from that incident is that I was overwhelmed by the support I did have, and the friends that supported me and picked me back up. I received many messages of support and what touched me the most was a message I received from a friend who does not have IBD, who had never heard about ostomies and IBD before I introduced her to them from being so open, especially via facebook. I would like to share that message:
“I have no connection to IBD and only know you as a friend. Seeing your photos of you and Squirt have shown how much courage and bravery you have. Ignore the haters. They are not worth your energy. However, showing others your courage does. Chin up girl, brush it off and keep fighting!”
There is still a lot of stigma and stereotyping around ostomies, which I plan to continue fighting! I know I will hit many more bumps in the road but I know I can keep going due to the awesome support out there. I’m not ashamed of my stoma. I hope I’ve made Alison and all of you guys proud!