This session featured Erica Dermer, Patient Advocate, Founder of “Celiac and the Beast”, and Cedric Pulliam Ph.D., Clinical health psychologist, joined by host Megan Starshak, a patient leader living with ulcerative colitis who came together to discuss living with autoimmune gastroenterological disease.
Recorded October 2021 at the Autoimmune Community Summit.
When talking about one’s health journey, it can be uncomfortable, even triggering. That emotional burden is why having good mental health support, or social support is necessary. It’s important to find the kind of support one is most comfortable with, and ideally, physicians should play a role in connecting patients with those options.
“There are other alternatives,” explained Cedric, “Art therapy, music therapy, yoga, other types of fitness. But I don’t think we’re exploring them enough in IBD and the other autoimmune spaces.”
Megan added that, though research into the mechanisms of disease is vital, the goal of getting patients back to the activities that bring value to their lives is just as meaningful.
Erica talked about how in Celiac disease, quality of life studies have found that the psychological burden is quite high for patients and caregivers, “Second only,” she asserted, “to end stage renal failure.” Psychosocial issues in Celiac communities revolve around the challenge of dietary restrictions; restrictions which go well beyond just abstaining from gluten, they must also be “Celiac safe”.
Dating, for example, is especially hard, and a good example of the diet-related challenges Celiac patients face. “Dating is the biggest thing we’re studying now that we haven’t before. I myself went through it and it’s awful. Hello, my name’s Erica and I have a digestive disease and I talk a lot about poop. Happy first date! Sixty eight percent of people felt their Celiac had a major or moderate impact on their dating life.”
“There’s a lot of disordered eating in Celiac disease patients, especially teenagers. Not nearly enough people are having these open conversations about how hard it is living with this or any digestive disease. If food makes them feel bad, they’re going to have unhealthy eating habits.”
“I really struggled,” explained Cedric, who sought out one-on-one therapy that was LGBTQ-supportive. As he relocated across the country, he went through his insurance to find a provider who was Black and supportive of LGBTQ. His search led him to support organizations, where ultimately, he found a provider that fit his needs. “A lot of people don’t have that kind of support, but we need it.”
Erica added, “I love therapy, so I’ll always recommend that.” But she shared a caveat about online social media groups. Facebook support groups are often led by non-experts, and so don’t have the same benefits of a live, professionally led support group. Patients should beware bad science and unsubstantiated claims.
“Social media,” added Megan, “Is a double-edged sword. You can connect with all these amazing people and access resources we couldn’t access a few years ago. But I’ve found groups I had to walk away from because they were not constructive, or supportive. Don’t be afraid to try a few out until you find the one that’s trustworthy and mentally and physically healthy for you.”
“Currently in the US,” proceeded Cedric, “IBD has 250 active clinical trials being conducted. When I look closer, very seldom do I see clinical trials that focus on People of Color. More inclusion and diversity are needed.” A shortage of doctors, medical professionals, researchers, that represent Black and Hispanic populations makes this difficult. And also, though some minorities are hesitant to participate in clinical research, many are just not offered the opportunity.
“The issue we’re struggling with as a nation is accessibility,” added Erica. Telehealth and online research may provide some solution, but excludes those without reliable internet. The need for equitable access – be it by gender, age, technology, socioeconomics, race, sexuality, geography – was very much on the minds of the panel.
Cedric added that clinical trials need to provide internet access, and not just for the duration of the trial. Trials would serve better to ask about things like food insecurity. Such matters of social wellness should be built into clinical trials.
To meet these diverse categories means there needs to be more funding and awareness to push research forward. But that won’t make a difference if patients don’t also get engaged and involved. And engagement will grow as patients become empowered with education and the tools of support.
We tackled the most pressing topics that impact patients and caregivers living with autoimmune conditions.
Together, we’re accelerating the pathway to breakthrough treatments.
