Yesterday I returned from a vacation with another IBD patient. This is the second vacation I’ve been fortunate enough to take this year and also the second where the intent was to go and visit my friends who are also living with IBD. At this point in my patient journey, the vast majority of my friends are also patients. But it wasn’t always like this, and when I try really hard I can remember a time in my life where I didn’t know another soul living with IBD.
Creating friendships online
In 2009, I was diagnosed with ulcerative colitis and I had no idea what that meant. I didn’t have any other friends or family living with IBD so I turned to the internet to find information and other people I could talk to.
That first year, I didn’t really dive into the world of online forums until I knew that I was on the surgery path; at that point I started seeking out other patients who would know about J-pouches. I spent a lot of time on one forum in particular and made a lot of connections there.
What I didn’t know from those seemingly unimportant messages was that some of the people I met on that forum would turn into lifelong friends and, in some cases, people I would eventually consider family. The friends I made on that forum were the first people I ever met who lived with IBD.
For the first time since my diagnosis, I had people in my life with whom I could share my fears, people I could ask questions of and be completely honest with. The people behind those screen names changed my life, and in the long run changed my outlook.
Creating friendships in-person
Not long after my colectomy, I was talking to a friend I met on that forum who told me he was applying to be a counselor for Camp Oasis, a camp for kids living with IBD and ostomies. Later I also applied to be a counselor for Camp Oasis and when the first day of camp arrived, I showed up without knowing a single person.
I still had never met anyone face to face who had IBD, and I had no idea what to expect from this camp. By the end of my first week, I had a new family. My Oasis Family was the start of my ever-growing IBD family. It was as if the huge weight of isolation had been lifted off my shoulders and a void in my heart had been filled. I had friends, in real life, who understood.
Summer after summer we would all return for the one week a year. A week where we could be our true selves and share stories and IBD humor. Camp felt like a magical place that was made especially for me. The friendships that I made over that week in the summer supported me through the year until the next summer. The endless group text messages and Skype sessions reminded me over and over that I was no longer alone in this fight.
The impact of IBD friendships
Since creating these friendships, I have traveled across the country to see these friends. I’ve attended weddings and funerals of IBD friends, and I’ve even started a business with some of them. I can no longer remember my life before these people were a part of it. They have supported me through the lowest of lows and lifted me up during my greatest achievements.
Creating friendships with a common denominator as strong as a chronic illness is like building a solid foundation for a house. The materials are already strong, but putting them together makes them indestructible.
My friends with IBD are knowledgeable and educated, they are good and compassionate people, and they’ve all been to hell and back. They inspire me when I’m feeling sorry for myself, and they remind me that we’re all capable of much more than we can ever fathom. Having friendships this strong is like combining what it feels like to be a parent, a sibling and a spouse, all at once; you’re proud of their successes and devastated by their setbacks, but the difference is you can fully understand every step of their journey.
Reasons why IBD friends are the best friends to have
I could keep gushing about how beneficial it is to make friends who also live with a similar condition but I think it would be best to sum it up in a list.
- Chances are they are also awake when you’ve got late night bathroom trips.
- There is an endless supply of toilet humor.
- They will send you the best care packages when you need a boost.
- They will cry right alongside you when IBD is just too much to handle.
- They will also share all of the good news you have as if it were their own.
- They will remind you that things will always get better with time.
- Your friends are an endless supply of knowledge and can walk you through procedures or tests you’re facing.
- They won’t let you give up.
- Chronic illness creates some of the most compassionate, understanding and wonderful people this world has to offer.
- You get the opportunity to pay it forward by supporting your friends and the IBD community as a whole.
Jackie is an ulcerative colitis patient and the founder and Executive Director of Girls With Guts. Since diagnosis, she has been blogging her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community, and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page.
Published On: June 30, 2016