Jenny Jones guest post, “The Strength of Support,” outlines her lifelong experiences with two rare diseases. She describes how the support she finally found helped her.
Jenny writes Life’s a Polyp to encourage and educate people.
I was only a child in the 90’s when I was diagnosed with two rare diseases – Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). My mother has the same diseases and my grandfather also had FAP but outside of that, I didn’t know anyone else with my diseases or an ostomy. In some ways this was almost the perfect time to be diagnosed with a rare disease – or two. The internet had just been made public in 1991, opening a whole new world to those with rare diseases and chronic illness. Unfortunately, it wasn’t as helpful to me though due to my age – I was 10 when I received my SBS diagnosis. It was very isolating growing up with rare diseases and an ostomy.
Outside of my family, the only additional support I really had for my health was the local ostomy support group. Only, I was too angry about my health at the time to be receptive to the benefits of a support group – especially when I was the only child there. My doctor and the support group would lead me to the Youth Rally though – and this would be the start of my emotional healing.
Meeting Others My Age for the First Time
The Youth Rally is an organization for teens with intestinal or bladder dysfunction and diseases to learn independence and receive support from counselors with similar conditions. Here I met other teens with ostomies. I was a painfully shy child and it’s amazing that I flew across the country, by myself, to spend a week with people I had never met before at a college campus. Despite my shyness, I made friends with campers and counselors. Only one other person there had FAP – a counselor – and there were only a couple of campers from my state. But that didn’t matter. Even one person outside of my family with FAP helped me feel less alone in my rare disease and all the others there with ostomies too helped me feel less alone in being an ostomate.
Branching Out
When I came back home from the Youth Rally, I was still extremely shy and hid my health from those around me at home. But I was free at the Youth Rally – I didn’t have to hide anything or be ashamed about my health or ostomy. As I became older, I was able to branch out to the online ostomy community – the United Ostomy Association (at the time) had an online forum. Here I was able to answer questions from other ostomates and share my own experiences. I was able to help others in a way I had never been able to do so before and it was an incredible feeling.
As an adult, I was able to attend conferences hosted by the United Ostomy Association where I met even more ostomates and others with similar health conditions as well as participate in educational seminars. These conferences were incredible experiences. Not only was I learning but I made lifetime friendships and memories I hold dear to this day.
The World is at Our Fingertips
As technology continued to advance, I found an entire new online community specifically for my rare diseases through social media platforms. I never would have imagined the opportunities social media has allowed for the chronic illness world. There seems to be a Facebook group for just about anything and we can search any condition through social media posts to connect with others.
If you’re feeling isolated and haven’t found anyone with the same or similar condition yet, social media is a must try for connections. There may not always be someone local, but there’s someone in the world who understands what you’re going through.
About Jenny:
Jenny has two rare diseases – Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). She lived with an ileostomy for 6 years before having it reversed into a Straight Pull Thru. Her medical experiences have led her to dedicate her professional and personal life to the chronic illness community through work and Life’s a Polyp. With a focus on raising awareness and empowering others, she also raises research funds for FAP through NORD. She has also published Life’s a Polyp with Zeke and Katie – a children’s book about FAP.
Investigate Further
Mayo Clinic’s excellent article informs about ostomies and how to live with them.
Watch for my upcoming review, next week, of Jenny’s children’s book.
“What People Are Seen …” contains suggestions on seeking support and gives ideas for friends and family.
“Lend Me Your Hope PLEASE” shows the emotional need for support, providing ideas for help.
I was recently diagnosed with a rare disease and I agree, finding support is essential! The group I found on Facebook helped me find a doctor who is experienced in treating the disease.
So glad they could help. When I first got a diagnosis, several years after problems started, I had no support outside of family and friends. That was hard. I felt so different than other people. (Years before internet and social media.) It was such a relief when I did find others like me.