Coping | Daily Life | IBD
When I was first put on a biologic medication for Inflammatory Bowel Disease (IBD), my grandmother joked that I would be riding roller coasters in no time. That’s because according to the commercial she saw on television, people put on this biologic would get into remission quickly and finally ride roller coasters again. Now that I’m on a different medicine, a janus kinase (JAK) inhibitor, according to their commercials, I’ll be white water rafting soon.
Photo of person holding a television remote by Erik Mclean
The first biologic’s current commercial has a man hiking, riding up a gondola, eating out, and eating what he wants. It also shows a woman with her family riding horses and fishing. Clearly, they have both achieved remission on this biologic and are doing very well. The commercials are making it seem like once you take this medication, you’ll get better as quickly as 4 weeks, and then you can start enjoying life to the fullest. Both medicine commercials talk about how you’ll get rapid relief symptoms at 2-4 weeks. The JAK inhibitor says that you can achieve lasting steroid-free remission and that it will visibly reduce damage of the intestinal lining. The first biologic’s commercial’s catch phrase is “controlling my symptoms means everything to me.”
While I agree that’s the goal for people living with IBD, how they are painting this “lasting remission” is not what that actually looks like. Lasting remission looks like some days where you’re still lying in bed all day. It looks like days where you can’t eat what you want. It looks like some days where you’re running to the bathroom constantly. It looks like days where you’re driving to doctor’s appointments or treatments. These commercials speak on lasting remission and how your life will be so much better when you’re on the medication. But it’s not realistic. Sure, I did start to ride roller coasters again when I was on the biologic, but I didn’t feel well doing it. I could go on a hike or ride a horse like the JAK inhibitor commercial suggests, but I also wouldn’t feel well doing that. I’m not in remission yet, but I can guarantee that even if I was, I’d still be fatigued and weighed down from IBD, so those things are harder to do.
Another thing that bothers me is that these commercials make it seem like you’ll reach remission quickly if you take them. However, that’s not the case at all. I was on the first biologic for a year and didn’t reach remission. It did help me a lot, but I still didn’t get there. Although I’m close with the JAK inhibitor , I’ve been on it 6 months now and am not in remission. So, talking about how you’ll get rapid relief is a good and hopeful thought, but not a realistic one. The creators making these commercials don’t know what it’s like to actually have IBD.
When I was doing research for this blog, I watched another medication’s commercial (another biologic medicine), and I was pleasantly surprised. I was expecting another one like the former two, but it actually portrayed chronic illness in a way that seemed correct to me. There were signs in the commercial that read “flare ups” and “abdominal pain.” The actors were saying things like (regarding IBD) “you’re more than just a bathroom disease,” “you’re a life of unpredictable symptoms,” and “it’s our turn to take control.” In yet another biologic medicine’s commercial, it showed a woman on a toilet everywhere she went, but then she slowly started to get better once she took the medication. Both commercials were more of a correct way to portray chronic illness. Because IBD is a bathroom disease. I once read that people spend one year of their lives on the toilet, but I know for a fact that number is higher for someone like me who has IBD. IBD is a life of unpredictable symptoms. One day you could be feeling fine, and the next day you could be stuck in bed. IBD does involve flare ups and abdominal pain. Other medicine companies should take a hint from these last two commercials so that chronic illness is portrayed in a more realistic way.
Hannah in Kelowna, BC.
When it comes to social media, there are social media accounts on Instagram that I feel do a good job of portraying chronic illness.
My friend and fellow GWG volunteer, Hannah (@hans_colitisjourney), has an Instagram account dedicated to “making invisible illnesses visible.” She’s an IBD, ADHD, and ileostomy advocate. Hannah makes posts that range from “things I can do with an ostomy” to “my fav IBD resources.” She shares her story of being diagnosed, getting surgery, and now living her life the best she can.
Ben at the gym.
Another account that I admire on Instagram is @stomadiaries. Ben makes posts about “things my past self would have benefitted from hearing” or tips on working out with a stoma. He also posts about body positivity living with a stoma, encouraging people to still wear whatever they want while having one. Ben interacts with his followers often by having Q&A sessions.
Social media can do a good job of portraying chronic illness by emulating these accounts. When I was younger, I tried to make sure my social media account didn’t show anything about my illness. Now, I make posts about my illness at times and share all of my blogs. If you have IBD, I encourage you not to hide your disease on social media, but rather embrace it like these accounts do. It’s nothing to be ashamed of.
Books, newspapers, magazines, the internet and even blogs like this one can portray chronic illness in a realistic way by following suit: Not masking symptoms, not showing people going on all of these incredible adventures, and not making it seem like remission will happen immediately if you get on certain medications. There are many books on IBD that paint a more realistic picture, and there’s even a Crohn’s & Colitis For Dummies book out there. On the Internet, you can go to crohnsandcolitisfoundation.org which has a lot of resources. Since you’re already here, you can explore more of girlswithguts.org, because it does an amazing job of portraying chronic illness realistically.
Media isn’t always realistic. It’s far from it. There’s fake news everywhere, people are posting their “best lives” and yet hiding everything that’s actually going on. One key motivation of commercials is profit, and companies are willing to do what it takes to get that. To combat this, we need to portray chronic illness in a more realistic way. We need stories that reflect the struggles, the challenges, and the resilience that comes with living with a chronic condition. It’s important to show both the highs and the lows, the moments of strength and vulnerability. Only then can we start breaking down the stigma and create a space where those facing illness feel seen, heard, and understood. True representation means embracing the complexity of human experiences and showing the full spectrum of what life is really like.
Born and raised in Pennsylvania, Emily was diagnosed with severe Crohn’s Disease in 2016 at age 17. Being 25 now, she wants to help bring awareness to IBD. Emily is currently pursuing a master’s degree in Education. She currently works as a substitute teacher but her dream is to be a first grade teacher. Outside of working, she enjoys traveling, spending time with loved ones, and reading.