When Raising Awareness Backfires

When Raising Awareness Backfires

If you spent this past summer watching the Rio Olympics, you might have noticed the two silver-medal competitive swimmers, 20-year-old Siobhan-Marie O'Connor and 19-year-old Kathleen Baker, who used the Olympics as a platform to raise awareness about Inflammatory Bowel Disease (IBD), one of many incurable autoimmune diseases. You may be wondering what these terms signify and how these young women could possibly be ill if they competed at the Olympics and appear so healthy.

IBD is a disease in which your immune system thinks your body is a villain, and attacks itself by causing inflammation. This chronic condition includes the two following diseases: Crohn's Disease and Ulcerative Colitis (UC). Not only do they cause excruciating abdominal pain, but they also make you sick from head to toe, 24/7. If left untreated, they can lead to severe complications. If you know someone who suffers from IBD, or any other autoimmune disease for that matter, it means they're constantly feeling ill, in pain, fatigued, often depressed and anxious, not to mention that they are also suffering from all the additional side effects caused by their medications. The hardest part about IBD is that nobody can physically see how terribly these patients suffer on a daily basis. Those suffering from IBD appear to be normal, beautiful, and healthy individuals. Patients often wish their conditions could be visible to others rather than doubted and unconvincing.

In the IBD community, we are always thrilled when we see fellow patients raising awareness about the disease, sharing their stories, and achieving great things despite their poor health. We know what it takes for them to get to where they are – the pain, the tears and the constant struggle of making the best out of their lives while trying to hide how sick they really are. This is why we were so proud of Kathleen and Siobhan-Marie for having the courage to speak out about IBD, a disease that is rarely understood and acknowledged by others.

Kathleen Baker said: "I definitely have been through my fair share of adversity. I think it really helps me appreciate the sport even more, knowing that it can be taken away from me. I love swimming more than anything in the world, and to be able to swim in the Olympics – it’s an incredible feeling. I hope I inspired a lot of people today... I think this is something I’ve been put here to do. I’ve never given up on my dreams. I hope people are the same." (Crohn's & Colitis UK, 2016)

It made us happy to see that despite not feeling perfect, their conditions were managed well enough to allow them to swim competitively and follow their dreams. The majority of us are not so lucky, causing us to have no choice but to give up on our biggest dreams. And so, we were hopeful that thanks to the millions of viewers listening to these athletes' stories, more people would finally be informed about IBD.

However, just as quickly as our excitement grew, our hopes then dropped after we experienced the aftermath of the televised advocacy. I never thought that something as positive as raising awareness about Crohn's and UC could so quickly backfire in the IBD community. Unfortunately, due to the fact that Olympic athletes were admitting to suffering from these conditions, a misunderstanding occurred among viewers for whom it seemed that the disease must not be so severe if the athletes could compete in the Olympics. Today, when someone hears that I have IBD, they often no longer ask "IBD, what is that?" but instead say, "Oh, I heard of IBD. It can't possibly be that bad! Those two Olympics swimmers have it."

At this point, I honestly don't know which is better: not knowing what IBD is or invalidating its severity. Wouldn't the world be a perfect place if people took others seriously when discussing medical conditions, and accepted that each person can be affected by them differently. We are not all the same, especially when it comes to our immune systems. Just because someone with IBD is an athlete, it does not undermine the severity of their condition.

We are tired of people doubting how sick we are and so we ask not to be judged, whether we are athletes, students, employees, or simply friends. It is important to have an open mind towards medical conditions you hear about, and to the way they affect people differently. Chronically and invisibly ill people such as Kathleen, Siobhan-Marie, and myself, are feeling real pain on a daily basis, so the last thing we need is for our pain to be questioned. We need support.

In the end, those of us affected by this condition try our best to live our lives to the fullest despite always feeling awful. We must keep moving forward, as IBD will never simply go away. Instead of treating the disease like our enemy, we must treat it like our friend and learn to live with it as best we can (some wise words my gastroenterologist once told me). So next time you meet someone who has IBD, or any other medical condition, please think twice before doubting how they feel and judging them, even if they look healthy. Try to think about what they may be experiencing and the difficulties they have to deal with in order to get through their day.