acceptance,  advocacy,  awareness,  Colorectal Surgery,  coping with flare,  Crohn's,  living with IBD,  Ostomy,  patient rights,  stigma,  Ulcerative Colitis

The Value of Support Groups

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.

To find a support group near you, please visit the following websites. For IBD groups: http://www.crohnscolitisfoundation.org/chapters/. For ostomy groups: https://www.ostomy.org/support-group-finder/. Also, check with your local hospital to see if they sponsor any patient support groups.

**Originally published in IBD News Today on August 23rd, 2018: https://ibdnewstoday.com/2018/08/23/ibd-value-support-groups-community-new-york/

My name is Tina and I am from the NYC area. My background is in legal and compliance for financial services. Due to the severity of my Crohn's and multiple extraintestinal manifestations, I have been rendered unable to work. I have served as a case study for a number of renowned doctors and surgeons across the country. I hope that the research done on me helps current and future populations of IBD patients. In a world where the #metoo movement has erupted, I believe it is high time for patients like myself to speak up about the ravaging aspects of chronic illness and disability. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance of our daily struggles. I own my Crohn's and my goal is for you to as well!

One Comment

  • Kayla Robison

    Love your website and look forward to reading more!
    Mom of a 16 year old with Ulcerative Colitis.