Crohn’s Diagnosis: The Relief is Wearing Off

When I was first diagnosed with Crohn’s (almost two months ago now), I was ashamed to admit that I was relieved to hear the diagnosis. Dare I say, ecstatic, even?? After two years of turmoil and suffering, I finally had an answer for all of my problems! But it felt weird to admit that I was excited and relieved to find out that I had an incurable disease. While I’ve had my fair share of really challenging times over the last couple of years, I don’t have it the worst by any means. There are a lot of people out there suffering from far worse diseases—good and young people dying from cancer, and people facing much tougher circumstances than me. So, while I was relieved to finally have a path forward for my own health, it brought with it a sense of shame and guilt for feeling the way that I did. I’m still trying to unpack this, and I think that maybe the right answer is just to hold space for both feelings.

Now, after a few weeks of holding space for all of my feelings surrounding my diagnosis, I am starting to notice a shift. The feelings of relief and excitement are not quite as strong as they were. More and more, I am noticing feelings of trepidation and fear starting to weasel their way into focus. I have not been able to start treatment for Crohn’s yet because I am still waiting on insurance to approve my doctor’s request (we were denied the first time, so I’m hoping that her appeal does the trick). I’m starting to realize that having a diagnosis can only get you so far—but without treatment, your disease will soon rear its ugly head.

My symptoms have gotten worse since diagnosis and have become a daily reminder that this disease actually isn’t something I want to f**k with. I am admittedly tired from having to live the last two years untreated and pretending like I don’t have a chronic autoimmune disease attacking me from within. I’ve had to train and race as if nothing is wrong, and I have only just barely managed to keep up with this farce from the outside. But on the inside, I am really struggling.

I’m starting to realize the full scope of what having this disease may mean. Like many other autoimmune diseases, Crohn’s occurs on a spectrum. Every patient with Crohn’s disease can have varying symptoms and in varying degrees of severity. Some people with Crohn’s may suffer greatly and have their lives and movement greatly impaired by their disease. They may have multiple bowel resections and ultimately have to live with an ostomy bag for the rest of their lives. Others may achieve remission with minimal treatment and maintain that for many years, living a completely normal and healthy life.

As a professional athlete, I can only hope to be the latter. As a human, I am naturally very scared of the prospect of the former.

In an effort to try and pick my spirits up, I did some research this week to try and find other elite athletes who suffer from Crohn’s or another IBD (inflammatory bowel disease). While there aren’t a ton of examples of professional athletes with Crohn’s, there are a few! They are NBA and NFL stars, Olympians, and World Record Holders. Knowing that it may be difficult to continue doing my job, but not altogether impossible, has been a comforting thought. If these athletes can do it, then I hope I can too. And people have run through far more challenging situations than this!

Knowing all of this helps. It helps me when I start to get really down about how I will ever be able to train enough to get fit again. How will I ever heal my body enough to be able to race as hard as I know I am capable of? Could I ever be a World Champion again, now that I have this extra baggage to carry around with me? Will I still be able to set PRs, or are all of my fastest times and performances behind me? Will I ever go for a run again and truly enjoy it—and not feel like shit, or like I have to shit?

At the age of just 29, I feel like I was only just getting started. Patience is not my virtue, but it is looking like enduring this challenge is going to be a test of patience, to say the least. So yeah, I would say that the initial excitement and relief of finally getting a diagnosis is wearing off now. I’m starting to feel scared about what the future holds for me. I think that now the real hard work will begin. I will start to get treatment, which should help me start to feel better, but it will take some time. And it will be a treatment that I will have to continue to get for the rest of my life, which will surely be an adjustment as well. Learning how to train and race at the professional level while balancing treatment for my disease will take some time. Learning when it is safe to push and when I need to back down and let my body rest will also take time.

I don’t really know what else to say to myself, and this was more of an open-ended ramble than a nicely buttoned-up blog post with a clear message and ending. All I can think to end this with is:

Buckle up, buttercup. It’s going to be a bumpy ride.