Recently there has been a lot of debate in the IBD community about stories being shared of IBD patients who have been very successful and being talked about in the media. Kathleen Baker being the most recent. She is an Olympic swimmer has been all over the media for having Crohn’s Disease and getting the silver medal in her race.
A few weeks before the Olympics she announced she has Crohn’s disease and of course because of her being in the Olympics media outlets were all over this story. She could only do one event because of her Crohn’s and the stories outline the struggles she faced with IBD. It was not easy for her. Check out my friend Colitis Ninja’s post about how she struggled IBD Olympic Champions.
I know some people will not agree with me and that is totally fine, but I wanted to tell you how this is making me feel as a patient whose disease is controlled enough to pursue my dreams.
I totally get that the media often does not portray accurate information about IBD using words like “overcome.” Patients get worried that society or our friends and family might start to think we are not as sick as we say. I get it and that’s why we as patients and patient advocates need to break these stories down so people know not every IBD patient is the same, but that does not mean we should not share these amazing stories. Honestly, they inspire me to keep pushing on. We need to share the good, the bad and the ugly of IBD. We have to, we can’t just share the bad constantly. That is depressing. It is okay to maybe be jealous of some people or wish you could do more, that is normal and I think we have all been there but we can’t live in that state of mind and let it shape our attitude towards every patient story. These IBD patients/athletes have been through hard times and we can relate to that.
Everyone’s Disease and story is different. IBD has stopped some people from achieving their goals in life whether it is not finishing school, having to quit their job, spending months and months in the hospital you name it. I hate that this disease has done so much damage to people, people that I call friends and it honestly breaks my heart but not everyone is affected the same.
I will be super honest. I am extremely tired of this rift in the IBD community about posting positive stories of IBD patients who have achieved awesome things in their life. Most of those people went through hell and back to get where they are and it was not easy. We don’t know what people went through before they were able to get to a point where they could become an Olympian. I do know it involved a lot of blood, sweat, and tears. Once again the media stories of Kathleen Baker have shown her struggle to get to where she is and it wasn’t easy.
IBD freaking sucks and there are definitely plenty of stories about the horrors of IBD but people also need to see that with a disease like IBD people are capable of achieving greatness. We also need to show that there are people who unfortunately IBD has stopped them in their lives and not that they haven’t achieved greatness or been successful they’ve just had to slow down.
The negativity in the community is not helping anyone.
My story is not all butterflies and sunshine. I have spent countless days in the hospital, multiple surgeries including 4 total hip replacements, almost 2 years out of college, failed off IBD drugs and was just diagnosed with osteoporosis at age 24.
Even though my journey has not been easy, it still upsets me and makes me feel like an awful person because my IBD treatment is working and I feel pretty good most days. I don’t know how many times I didn’t think I would get my degree and wanted to just quit. Have had countless hospital stays where I laid up in the bed forcing myself to study organic chemistry and microbiology because if I didn’t while I was at the hospital I would get way behind.
IBD has kicked my butt up and down the street, decimated my bones, and I honestly feel like I’m close to needing a wheelchair at this rate, but I am finally at a point to where I can do more. We should celebrate those where modern medicine has succeeded and controlled their disease. Not that I am super successful but I am able to chase my dreams at the moment and pursue what I am passionate about. Scientific Research. Can that change? Heck yeah, every day brings a new challenge and I worry I might have to give up and have already had to stop school multiple times and been through hell to get here and I have to work harder than most students. Yet, the way some IBDers are talking I am afraid to share my successes because they might see me and be angry or upset that I can pursue my dream of getting a Ph.D. to do scientific research. This is not how anyone with chronic illness should feel because I and may others have worked so hard to achieve these small successes.
As my advocate friend Jaime said “I couldn’t do it. But I’m sure as hell someone else could and I would never fault them for succeeding… None the less at an Olympic level!” If I am physically able to do things I am going to push through the pain because I don’t know when the next big flare will happen.
I hate that I know people where it has kept them from achieving what they wanted, but in a lot of those cases those people found their niche in some other place and are AMAZING at it. IBD has opened doors for many people and given them new opportunities they never would’ve had without the disease. I HATE that sometimes it takes a disease to open these doors and help people find another niche but it’s also not fair to be upset when people like the 2 Olympians who have battled IBD and are receiving national attention.
Here’s the thing. Success comes in all shapes and sizes. Success to me is finishing school, and success to Kathleen Baker is swimming in the Olympics. We both are IBD patients, we both have struggled with our disease but her successes don’t make her better than me or anyone else because we all have our own view of success.
Every IBD story deserves to be told, the good, bad and the ugly of IBD. We as patients should look at these stories as inspiring, not upsetting. We should cheer for each other when we achieve something we worked hard for because we know better than anyone how hard IBD is to live with and how hard they had to work to get there. We also need to advocate for each other when the media portrays stories that might hurt the IBD community as a whole and strive to break stereotypes that are formed after these stories are released.
As one of my close friends with IBD said: “Your ‘thing’ may not be IBD, but everyone has some sort of challenge or obstacle in life. And your other ‘thing’ may not be making the Olympic podium, but hopefully, you have goals. Maybe that goal is just getting out of bed for the day. If that’s your accomplishment, that’s A-OK. Because you’re still overcoming something. So really, Kathleen’s story, all of our stories, are about so much more than an IBDer getting an Olympic medal. It’s about the fight in all of us to find a way to not let go of or life dreams and goals.”