In a world where medical professionals have only a few minutes to go over a whole slew of symptoms, medication interactions, and surgical complications, it is impossible to cover the psychosocial aspects of one’s condition(s). These aspects include methods of coping with the emotional roller coaster of living with inflammatory bowel disease (IBD).This is where support groups come into the picture. They fill that gap between doctor-patient interactions and provide real-time support and understanding to patients caught in the rigmarole of hospital visits, health insurance, and invasive testing. But more than this, the true value of support groups lies in empowering patients by fostering lifelong friendships through a deep understanding of the ins and outs of chronic illness, and how it affects various life experiences.I regularly attend patient support groups, including groups specific to having ostomy surgery and living with IBD. I remember my mom encouraging me to attend a group in the hospital over a decade ago. I was quiet at the first meetings unless I had a burning question that was percolating in my mind. I struggled to share my story or the extent of the issues I was facing due to the stigma of having a bowel disease, an ostomy, and later, multiple fistulae. But the experience was valuable because I would leave those meetings feeling less alone, less afraid, and less ashamed of the havoc my body was wreaking on itself.
Fast forward several years, I began to speak up at meetings, and I noticed that many participants would reach out to me separately to talk, and sometimes to hang out. I soon began to facilitate support groups as a volunteer for the Crohn’s & Colitis Foundation in New York City, specifically the Women’s Support Group, and occasionally helped with the Co-Ed Group as well.
Amy and I as co-facilitators of the Crohn’s & Colitis Foundation’s Women’s Support Group. (Courtesy of Tina Aswani Omprakash)
More recently, I’ve been helping the Foundation’s NYC Chapter organize a Teen IBD Group with ideas for topics of discussion, games, activities, socials, and guest speakers to empower teenagers living with IBD.
During this process, I’ve learned so much from the participants, and about myself. I’ve learned about their dreams, their willpower, their strength, and how caring and empathic each one of them is. As someone who has struggled to share her story with her friends, attending and facilitating these groups has made me feel at home. Hearing others’ stories of resilience has empowered me to take charge of my care and advocate for my rights as a patient. And more recently, listening to these stories has emboldened me to expand my advocacy and awareness work by writing articles and starting my own blog, “Own Your Crohn’s.”
However, I’ve also learned that society sometimes views support groups as a sign of weakness. When I mention that I enjoy attending and facilitating groups, some folks stare at me as if I have three heads. But the truth is, in a world where there is deep suffering, whether it be addiction, trauma, or illness, support groups play a significant role in bringing attendees to a greater state of wellness through their sense of camaraderie.
Ramzi, Melissa, and I promoting the Crohn’s & Colitis Foundation’s Teen IBD Group at the Brooklyn Take Steps Walk. (Courtesy of Tina Aswani Omprakash)
Above all, support groups are, in fact, a source of strength and courage, one that brings folks who are suffering in shame and in silence together to create more meaningful lives for themselves. I admire every person who walks through that door because reaching out is the hardest thing to do when we are sick and scared of what our future holds. To witness others living their lives in spite of chronic illness is truly inspiring and motivates many of us to do things we’d never even dreamed of trying.
Now, when mothers so kindly share that I’ve changed their daughters’ lives, it brings tears to my eyes. My mom and I were in their positions, too, once upon a time. And I can say without a doubt that attending those groups changed my life and propelled me forward into the woman I am today.
As I embark on a brand new journey to co-facilitate the Teen IBD Group in New York City, I’m excited to witness how teenagers living with this condition will come together, bond, and share their own experiences. I reflect on all my moments attending and facilitating groups. It helps me to remember why I do this in the first place: to help others like myself own their Crohn’s and their colitis, their ostomies, and their entire experience with chronic illness. And to help them transcend their limitations and make a comeback stronger than ever before.
The Healing Benefits of a Support Group for Crohn’s Patients
The group meets once a month, though she says they keep in contact more often through email.
Abdalla says that she, like many doctors, discusses the benefits of support groups with her patients during their first visit.
“Before they join any online or personal support groups, I remind all my patients that each IBD patient is unique,” she says. “Hence, they should not be discouraged by other individuals’ experiences or by their own disease course if it is not consistent with what others have experienced.”
She also encourages patients to bring back any concerns or questions they may have from the group discussions to address the issue in the clinic.
Eichelberger also has advice for people who have been thinking about attending a support group but who have not yet taken that step.
“I used to think support groups were for people who were unstable,” she says. “But it’s not at all like that. It’s not this formal scary thing. Everyone in there has been through, to some degree, what you’ve been through, and there’s no judgment. It’s an open forum and, for me, it’s just so therapeutic. It has helped me more than I thought it ever would.”
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Living with a chronic disease like Crohn’s disease or ulcerative colitis can be extremely challenging. Riding the IBD roller coaster alone makes it even tougher. It’s always good to have a support network around you—people you can lean on for advice or vent to about your frustrations. Sometimes, it’s somewhat medicinal to talk with people who get it – fellow patients who have lived through exactly what you are going through.
How do we find these support networks? With the rise of online chat groups and forums, it can be a frustrating task to find someone who’s right for you to talk to. But these support networks still exist! Below is a list of some of the best places to find a local support group or annual retreats for patients like you:
CCFA – The Crohn’s & Colitis Foundation of America is still the leader for support groups all over the country. You can visit their website to find a local support group near you. If there isn’t one close, there are still many online support groups that can help patients and their families out.
UOAA – The United Ostomy Association of America is a great resource for those with Crohn’s disease, ulcerative colitis, and ostomies. Many ostomates these days are IBD patients and can easily help one another. This is another great resource if you are thinking about possibly getting an ostomy or already have one as well. Visit UOAA’s website for more information on where they have support groups.
Girls with Guts – Each year Girls with Guts gets women together for a retreat that helps all the patients who attend, and more. These are programs that are designed by patients, for patients! You can visit the Girl with Guts website for more information on the retreats they offer.
Crohn’s Journey Foundation – Another great organization is the Crohn’s Journey Foundation. They hold yearly retreats for all IBD patients which cover a healthy lifestyle and how to deal with Crohn’s disease and ulcerative colitis.
Meetup – Another great place to find support groups is Meetup.com. This site organizes all kinds of groups but you can find support groups that directly help those with Crohn’s disease and ulcerative colitis.
If the above options don’t work, the amount of online support you can get is tremendous and many times immediate. There is always a fellow IBDer some where in the world that is awake and there to talk. Whether you need help at two in the afternoon or two in the morning, many times you can get a response or talk to other patients within minutes. Log on to the social media outlet of your choice and search Crohn’s disease or ulcerative colitis. Don’t forget to use hashtags (#) if you are using Twitter or Instagram to talk to others with IBD. When you type IBD, Crohn’s or ulcerative colitis into Facebook, you’ll find numerous groups to connect with.
As always, please use good judgment on who you talk to and what advice you consider. This is the internet and anyone can write whatever they think works. Have you been told that tree bark can cure IBD? Would you believe it?
Still, these online support areas are priceless and can be a great place to vent or meet other patients that are battling Crohn’s disease and ulcerative colitis just like you.
See more helpful articles:
How To Eliminate Worry When Eating Out With IBD
How Crohn’s Disease Affects The Body (Infographic)
7 Tips for Traveling With Crohn’s Disease
What You Should Know About Crohn’s Disease Treatments