Education, Advocacy, & Crohn's Disease

Kelly entered the hospital in April of 2004, after returning from a family cruise in Mexico. Unsure of what was wrong, her best guess was that she had picked up some sort of bug while traveling. 

As it turns out, Kelly had pancreatitis and, during one particularly scary night, came close to losing her life. She had to spend a month in the ICU. It took multiple blood transfusions for her to return to a stable state (transfusions which later became a source of inspiration in her advocacy work). 

Still, it was not until July that she had an endoscopy and a colonoscopy to confirm that the underlying cause was, in fact, Crohn’s disease. That was three days after her 17th birthday.

Kelly

Perhaps the most alarming part, though, was what came next. Kelly got a diagnosis and then nothing else. She left the hospital with three letters – I, B, D. 

“They didn’t give me resources, they didn’t give me any websites. It was mainly Yahoo at that point, or even Ask Jeeves.”

Thus began her advocacy journey. At first, she didn’t even know what to search online. Not to mention, she was still getting mixed diagnoses from different doctors. Over time, Kelly realized that if she wanted answers, she had to ask the questions. Achieving a position of self-advocacy has taken a lot of work and is still not easy 13 years later.

Perhaps the most alarming part, though, was what came next. Kelly got a diagnosis and then nothing else. She left the hospital with three letters – I, B, D.

Kelly speaks specifically about the power she felt when she started inquiring about the precise location of her disease. She began going to doctor appointments and explicitly asking ‘Where is my disease located?’ From there she took it upon herself to research what exactly it was that she had, the things that she could do for it, and what her quality of life would be.

“It wasn’t until I started asking exactly where [my Crohn’s] was that I felt educated and that I actually felt empowered. I could then do something about my disease, and be proactive about it.”

Kelly then had to leave for college in the fall of the year she was diagnosed. With hardly any information about her newly discovered chronic illness, she entered a stage of life that even the healthiest teenagers find challenging.

“It wasn’t until I started asking exactly where [my Crohn’s] was that I felt educated and that I actually felt empowered. I could then do something about my disease, and be proactive about it.”

She recounts thinking, “Do I tell anyone?”, “What do I do with these massive buckets of pills?”, ”Do they think I’m a drug addict?” Then, one person changed things. Kelly had become really close with a suite-mate in her dorm. Her friend had no context for what a serious illness entailed but, upon hearing the diagnosis, was kind and supportive. It was this friend, just one person, who helped Kelly toward acceptance. “It’s still a process everyday, but acceptance is a huge part of this disease – of any disease.”

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“It’s about finding different platforms to educate people because there were so many years that I struggled, without even telling anyone that I had Crohn’s disease. I simply lacked information.”

A few years later, Kelly got the idea to start what she calls #purpleproject. “I had just had surgery. I was laid up and it was winter and I was feeling so bad for myself. I just knew that something needed to change. I needed to do something for someone else.” So she began sending out care packages to people who had different types of chronic illnesses. This went on for around a year and a half, at which point she was physically able to get into running. As she began fundraising through running events, and was advocating more and more, she turned #purpleproject into a blog. Her blog is honest, powerful, and followed by thousands.

Her main mission has always been to help people, whether they were recently diagnosed or otherwise misinformed.

“It’s about finding different platforms to educate people because there were so many years that I struggled, without even telling anyone that I had Crohn’s disease. I simply lacked information.”

Kelly now focuses on raising awareness through endurance events. She works extensively with the Crohn’s and Colitis Foundation, and participates in their Team Challenge endurance program. She has done a half marathon in Chicago, a half marathon in Las Vegas, and is currently training to do a sprint triathlon. 

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Life is still far from easy. 

Even now, she talks of putting her training on hold for another year because there has been a lot of talk about surgery. For this reason, Kelly describes the experience of partaking in endurance events as a double-edged sword. She must physically build her stamina for each event and then may end up needing to skip it if her disease flares up. “And people don’t see that, when they look at you in pictures, especially race pictures, they just think, ‘Oh she overcame so much’ but there’s so little they’ve seen of the process of getting to the point of racing.”

On the other hand, endurance racing can be a very empowering outlet. Racing alongside her are caregivers, doctors, and other patients; it creates a space for connections and mutual support. Additionally, there are always people running who have had Crohn’s disease but are now in remission, and it gives Kelly hope of one day racing to her fullest, and enjoying life to the fullest extent she can. Not to mention her participation shows other people that even while amid a battle against chronic illnesses, one can still do the things that may seem out of reach. 

“Really, when I have the energy and battery life in my body, I use it. And I use 150% of it.” 

“Thirteen years later, it has taken a lot of work to be the advocate that I am today. And it has taken a whole team. I wouldn’t be here today if it wasn’t for some of the other advocates and doctors that I’ve had.”

Kelly’s mission to raise awareness led her to the Breakthrough Crew as well. She describes a frustrating experience with the two clinical trials she had identified as studies she was qualified for. One in particular was not communicating helpful details nor providing her with travel reimbursement. And, as she puts it, there was a significant fear factor because she simply was not given any information about the efficacy, safety, and variety of clinical studies. “No one had brought it to me -- my doctor hadn’t talked about it to me. There were just so many unknowns”. She now works toward changing that mentality. “It’s going to help patients from now to 25 years from now. We need the exposure to that -- we can’t be afraid anymore.”

Kelly continues to advocate for others, and for herself, every day. Despite expressing her distaste for the word ‘inspiring’ (“it’s overused”), that’s exactly what she is: an inspiration to those who, like her, are figuring out how to live with an invisible illness.

“Thirteen years later, it has taken a lot of work to be the advocate that I am today. And it has taken a whole team. I wouldn’t be here today if it wasn’t for some of the other advocates and doctors that I’ve had.”

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Darcy Hinck is a student at Tufts University, who spent her summer working as a content intern for Clara Health.