Going to my first support group I was a bit nervous and I didn’t know what to expect. When I think of support groups I think of people sitting in a circle, like in the movies, speaking about their troubles and all saying, “Thank You [INSERT NAME]”, after each person has spoken. It looks and feels more awkward but that’s how I imagined it might be. In fact, in real life it’s a lot different.
If you have never attended a support group for any reason I would recommend from personal experiences to try it out. In this case I am talking about ostomy support groups. In any case, for whatever type of support group, I’d say give it a try. You may really like it!
My first support group felt really welcoming and I met a lot of amazing people. I went in December, so it was their holiday potluck. I had first walked in not knowing where to sit or who to first approach, but I knew I would get something out of this experience. I am not a shy person, but I think anyone would relate in this kind of a situation. I really didn’t know where to start.
After I sat down, right away the three ladies sitting next to me started to ask me questions. ‘What’s your name?’, one asked. ‘Where are you from?’ stated another. ‘Oh, you’re so young what kind of ostomy do you have?’ I was so relieved and happy to share all about myself. I told them my name, age, that I had an ileostomy, and that I just graduated in May and found a great job!
“Smiling doesn’t necessarily mean you’re happy.
Sometimes it just means your strong”
We ate and then went to the lobby of the building and the President’s Tap Dancing Group gave us a show! It was so cute and when they asked for volunteers of course someone called out “Kristen wants to join.” So, there I was tap dancing in front of all the new members of the support group that I would later be a big part of. Well, at least I hope so!
This month I returned, and the group had a speaker from Convatec give a presentation. She gave out samples for us to try and told us about each product and what insurance covers it. This was great for those of us who did not know what products to choose or those who are looking to try something new. Your support group can help you with this! There’s always someone who has tried something else and can share their experiences.
We then separated into groups based on what ostomy we had and spoke about whatever we wanted. It was so refreshing to hear that others had similar problems and I also helped a patient who was having leaking problems like I had in the past. Towards the end of the meeting I saw a table in the back filled with supplies that were welcome to anyone! They have it there for members to bring if they don’t use them anymore. I went and grabbed a couple products I needed/ wanted to try and was visited with a kind lady who wanted to hear more about my job.
There are support groups of all kinds offered online, in person, or even on social media. If you don’t feel comfortable right now to attend in person, maybe you can try searching for a virtual support group that offers discussion forums from people all over the world sharing their experiences. Or if you would like to meet in person I’d recommend going to the UOAA website and typing in your zip code to find the nearest support group to you! The people you meet at support groups are there just for that; to fully support you. It’s someone to talk to that knows what you are going through and can help.
I personally only know two ostomates that I don’t see often so it was nice to go and talk about what I have gone through and hear their stories and their struggles as well as their successes.
I have often felt completely alone. I felt like I was the only one who was going through getting a bag at 19 in college and having to deal with it while trying to make my life normal. Now, I don’t even want a normal life. Normal isn’t always the best. I have found a way to live my life the best I can, and I am happy. Find happiness, keep smiling, and surround yourself with people who are there for you. This can be your best and most rewarding gift.
I’d like to hear from all of you! Have you tried attending a support group? Share your experiences with me in the comments. Or if you have joined an online group, even through Facebook, please share anything you would like! I don’t want any of you feeling alone in this! Everyone deserves a chance to share their story with someone just like them!
-Kristen Furey, Patient Champion