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Doctors Dismissed My Pain As Stomach Aches—Then I Was Diagnosed With This Chronic Condition
At 18 years old, I was in a super exciting time of my life. I just moved away from my home in New Zealand for the first time, and started school in Los Angeles, CA. I was playing soccer for UCLA as well as the national team in New Zealand. I was at a major height of my athletic career.
Then, out of nowhere, I started experiencing symptoms that were completely foreign to me. I had intense pain in my gut—plus my stomach was really bloated and sore to touch. In addition to constant diarrhea, I noticed there was blood in my stool almost every day. This was obviously alarming, especially for someone who was completely healthy up until that point. I knew something was wrong—it was more than just an upset stomach.
Getting to the root of my symptoms
I started Googling all the symptoms I was experiencing (which is always terrifying, and something I don’t necessarily recommend).
I saw a number of doctors, and quickly became very frustrated. I had to answer the same invasive, uncomfortable questions again and again, but no one could figure out what was going on. Pretty much all of them thought it was food related, and encouraged me to try a vegetarian diet. I felt so confused because as an athlete, I’ve always maintained a healthy eating style and taken care of my body.
However, for six months, I decided to listen to their advice and try this new diet. I didn’t notice a major difference in my symptoms, so I just did my best to carry on as best I could. It was an incredibly stressful time, because I knew something was up. I absolutely didn’t feel 100% and I wasn’t able to train or focus the way I could before all of my health issues started.
I had it in my head that, as an athlete, I was supposed to be strong and capable. I believed I needed to commit all of my physical effort to my sport every single day. But deep down, I know I wasn’t able to perform the way I used to, and that was really a hit to my confidence and identity.
After feeling very fed up, I decided to go see a specialist. After this doctor ran a few tests, I finally got a diagnosis: ulcerative colitis (UC), a chronic inflammatory bowel disease (IBD) that causes inflammation in the digestive tract.
When I heard the results, there was some sense of relief—I felt vindicated knowing there really was something going on. But that feeling quickly turned into stress. I thought: What exactly does this mean? Is this something I have to live with the rest of my life?
Coming to terms with my condition
From there, I was prescribed a variety of treatments for my UC.
It was a weird time in my life. I really didn’t talk to anyone about my condition for the first few years I was diagnosed, except my roommate and my mom. I didn’t even let my coaches know what was going on.
I think part of it was I didn’t fully understand what the disease was, and I didn’t know how to explain it to other people. So I had a really hard time building a support network around me, which felt very isolating. I tried to figure out solutions on my own, without seeking help—and that really took a toll on me, both physically and mentally.
At the time, I was still in college, and traveling a lot with the national team. I didn’t have a consistent doctor, so I made a lot of decisions that were definitely ill-advised.
As soon as I started feeling better, I’d stop taking my treatment as prescribed, because I thought I didn’t need it any more. Then I’d have to begin again when symptoms flared up. That cycle continued for a while.
In the years that followed, my flare ups started getting more severe, and it would take longer to settle the symptoms. It took me getting to the very pits of my disease that I really began to listen to my body.
While I was living in Seattle, I ended up getting hospitalized for a week. Because the disease had gotten so severe, it became necessary for me to change treatment options. I ended up working with a physician who really listened to me, and helped me figure out a treatment option that worked with my schedule (including all the traveling I was doing).
This was a couple years ago, and I’ve been so grateful to finally have a manageable regimen. It took me a long time to come to terms with the fact that UC was going to be a lifelong thing, but it finally feels like I’m on the right track.
What I wish I had known at age 18
If I could go back in time, I would try to get a much better understanding of my disease from the beginning (such as checking out supportingyouwithUC.com). I think it’s so important to educate yourself on what’s going on in your body, otherwise it’s really hard to admit that you need help, or seek out really solid treatment.
The second thing that has been the biggest game-changer for me is having a really good relationship with my physician. I’m very aware and conscious of my symptoms now, and I communicate them very clearly with my doctor. It’s been such a big weight lifted off my shoulders knowing I have a professional to turn to whenever I need support. I don’t have to be the one coming up with solutions and answers.
I also really value the support network in my life right now, and I wish I hadn’t been afraid to open up to people I trust much sooner. One of my biggest regrets is not telling my coaches or friends what was happening—I think it would have made things so much easier, emotionally, especially since a big part of what impacts ulcerative colitis flare ups is stress.
Now, in addition to my treatments, I try to mitigate stress by controlling the controllables. For me, that means tracking my diet and my symptoms. I keep a running list of questions for my doctor, and keep the conversation open. I’m also not afraid to ask for help from loved ones, and that has made a world of difference.
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