Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org
Living With Crohn’s Disease
Although she was only diagnosed with Crohn’s disease in 2019, Madhura Balasubramaniam has been struggling with Inflammatory Bowel Disease (IBD) for most of her life. After a tentative diagnosis of celiac disease in 2005, Madhura opted for a gluten- free diet, hoping to manage her daily symptoms. It wasn’t until her Crohn’s diagnosis years later, that Madhura began her journey towards patient advocacy for the South Asian IBD community.
Crohn’s disease is part of a series of diseases that fall under the umbrella of inflammatory bowel disease. Crohn’s is a chronic autoimmune condition, progressive in its nature, with the ability to remit and relapse. Crohn’s and other forms of IBD can be treated with a variety of different medications, ranging from immunomodulators to biologics as well as surgery.
As Madhura notes, “The goal of IBD treatment and care is to ensure that patients enjoy the best quality of life possible, despite the chronic nature of the condition.”
South Asian Culture & IBD Treatment
Madhura lives in Chennai, India, where cultural beliefs and stigma play a significant role in the way South Asian patients with IBD view their disease and seek treatment. Madhura explains, “There is a prevalent belief in the South Asian community and across the diaspora that chronic digestive conditions are induced by a patient’s diet or lifestyle choices, but that’s not the case. All IBD patients may struggle with this stigma, but it is especially difficult for South Asian patients. There is nothing we did as individuals to cause our IBD.” This cultural belief can make patients feel unfairly responsible for their disease.
“There’s the expectation that you should be trying to cure yourself through diet or lifestyle changes, when IBD has no cure. When this ultimately fails, patients may be accused of not trying hard enough. This condition doesn’t respond to those types of modifications and needs long-term medical management,” Madhura says.
Another important factor to note regarding South Asian culture, when considering conditions like IBD is the avoidance and fear of taking medication that exists among its community members. Madhura reflects, “There is a deeply rooted mistrust of medicine, reinforced by poor treatment in the western medical system for minority communities. This is in part why South Asians avoid taking medication, viewing it as a last resort. Additionally, many believe that medication is only a ‘band-aid’; it addresses the symptoms of the illness but does not provide a cure.”
With a pervasive stigma surrounding medication, complimentary or alternative medicine is revered and very popular for South Asian community members. “Practices like Ayurveda and Homeopathy are popular because they profess to treat the whole patient, claim to have no side effects, and promise ‘cures’,” Madhura notes.
“While alternative therapies can, in some contexts, serve as an excellent supplement, I don’t believe they can fully manage a disease like Crohn’s, and they should certainly not be used as a means to justify blaming patients who are struggling with their symptoms.”
Journey to Patient Advocacy
When reflecting on becoming a patient advocate, Madhura explains that her path to advocacy was gradual, and not without overcoming her own internalized beliefs and stigma.
“Throughout my childhood, I felt like I was the only one with my symptoms. I knew no one who had IBD. It was only after my diagnosis that I started speaking about it with others, that other people in my life spoke up about having IBD or knowing someone else who has it. That’s because IBD is so stigmatized in the South Asian community. Talking about chronic bowel symptoms is considered unsavory. I had internalized these norms, so I never shared that I had these conditions. Growing up, I rarely spoke about having a gluten-free diet and never said why. I grew to be ashamed of my symptoms.”
When she was finally diagnosed with Crohn’s in 2019, Madhura describes the feeling of a weight being lifted off her shoulders. “I was so relieved to have answers, but I continued to struggle with the stigma that exists in my culture. I thought I wasn’t sick enough to warrant a biologic treatment.”
After rapidly losing weight and experiencing malnutrition, Madhura’s GI recommended a feeding tube placement. Reaching that point changed Madhura’s perspective on her condition. “This moment is where my IBD advocacy began because it is where my personal advocacy began for my own care. I realized I needed to ask for help to overcome these internalized beliefs and begin to accept medicine. I also started seeking out other South Asian patients with IBD for support.”
Forming Patient Support Networks
Through social media, Madhura found other patients like herself. She met Tina Aswani Omprakash and others. Together with Sharan Kaur and Surakhsha Soond, they founded IBDesis “This is a platform created by a team of South Asians from South Asia and the diaspora, dedicated to uniting and empowering South Asians living with inflammatory bowel disease across the globe.” The creation of IBDesis, which began as a private patient support group on Facebook, has helped bring South Asian individuals living with IBD together, creating a non-judgmental space for members to seek encouragement or ask for advice.
Madhura shares, “We wanted to identify the unmet needs of the South Asian IBD community and find solutions to address these problems. As our community grew, we recognized the importance of including clinicians together to push for change for patients. This was the foundation for forming the South Asian IBD Alliance (SAIA), the first patient-clinician collaborative organization in the IBD space.”
Through the formation of SAIA, Madhura and her co-founders hope to create more accessible educational resources for patients and healthcare providers, minimize disparities the South Asian community faces, improve access to treatment for patients, and increase the participation of South Asian patients in clinical trials. IBDesis is the patient advocacy arm of SAIA.
“My goal is to make patient education accessible, and to create nonjudgmental support spaces for our community so we can come together and navigate these psychosocial barriers to care together.”
Clinical Research & Advice for Advocacy
Although Madhura has not participated in a clinical trial herself, she believes they are incredibly important for the IBD community. “My current diagnosis and treatment are only possible because of the patients who came before me and participated in trials. I am deeply grateful for these IBD patients and the trials available in the IBD space because it makes me feel like I have resources and options in my toolkit,” she says.
When it comes to being a patient advocate, Madhura shares some of her own advice and lessons learned: “Two things that have helped me are employing empathy and active listening for other patients. It’s critical in advocacy that we understand another person’s perspective and value their experiences. There is diversity in experience even in patient communities. Be willing to constantly learn and grow from patients and providers. The more education you have, the more knowledge you can share with your community and the more gaps and unmet needs you can identify and work to solve.”
“I never set out to be an IBD patient advocate. I saw incredible courage from other patients, and they helped me find my voice. The work I do now is to help pay that experience forward.”
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Sources:
https://ownyourcrohns.com/ibdesis/
https://www.southasianibd.org/
IBDesis Private Support Group: https://www.facebook.com/groups/ibdesis
IBDesis social media handles: @ibdesis
SAIA social media handles: @southasianIBD
