Thursday, October 1, 2020
Consultant editor Luciana Podschun introduces the sixth issue of StomaTips with a celebration of ostomy support groups
I find, when someone gets an ostomy, they rarely feel ready to talk about it with other people, and many still feel a sense of stigma around their stoma. This is why support groups are so important, as they remind us that we are not alone. They can introduce us to people in a similar situation and help us become comfortable discussing our stoma. Personally, I wish before my surgery I had been in contact with an ostomy group to clear up my doubts. I had my operation in my home country of Brazil, and I believe that hospitals there should put patients in touch with support groups to help with their wellbeing and quality of life.
When I did hear about ostomy groups in Brazil, they weren’t in my city. However, I did find groups on social media, and they helped a lot. Within days of talking, I’d made peace with the idea of becoming an ostomate. Even 4 years on, I find posting in these groups useful when I have concerns. Social media has been a great way to reach people in other countries, often where the stigma on stomas is especially strong. This is how I met Anisha Vijayan, whose 2018 film No More Secrets seeks to humanise ostomates in India, acknowledge the stigma they live with and help them speak out. My interview with Anisha is published in this issue.
Online contact isn’t a perfect substitute for meeting in person, especially before surgery. That closeness helps us hear people’s personal perspectives and build meaningful relationships. When I lived in California, from August 2018 to December 2019, I was lucky enough to attend a few monthly meetings of the Silicon Valley Ostomy Support Group. There, I was among people who seemed to understand me, and that was such a good experience for me. The people I met there reinforced my understanding that our stomas saved our lives and our ostomies were the best decision we ever made, even with all the challenges they bring. We shared scars and a stoma, but we had all experienced illness in different ways and for different reasons, and each of us had a unique story to tell. Having a local ostomy group was a great source of strength and support, as well as a reminder that we are not alone.
The coronavirus pandemic has made in-person contact more difficult. However, I look forward to meeting some of the friends that I’ve made since moving to the UK.
Consultant Editor, StomaTips