How I Learned That Living With Crohn's Is a Team Sport

Patient Expert
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It took a while, but after 25 years with Crohn’s, an invisible disease, I’ve accepted that living with this chronic illness is a team sport. Of course, this realization didn’t come easily — it took trial and error and many, many attempts to do everything I could on my own before getting to this point.

In fact, only about eight years ago, I insisted on doing everything by myself.

Even when I was going through some of my most difficult challenges with Crohn’s disease, I would go hiking and camping alone. I did it because it gave me a sense of independence and accomplishment. After spending three or four days alone in the woods, I felt like I could take on anything. And yes, I don‘t deny that I still enjoy that feeling of independence. When you’re dependent on others for so long, it’s nice to know you can do something — anything — on your own.

Over time, though, I slowly came to realize that I can still get a great sense of accomplishment while getting help from others. This change in attitude came when I was going through recovery from one of the most difficult surgeries I have ever had, making my ostomy permanent with a proctectomy (the removal of my rectum).

The surgery that taught me to say ‘yes’ to help

Going into the proctectomy, many people told me it was one of the hardest surgeries anyone can go through and that the pain level would be higher than past surgeries. They weren’t lying. The complications during the recovery were hard, and I lived at my parents’ house, near a bathroom, for six months, while having a visiting nurse service come to take care of me once or twice a day while I healed.

As you can imagine, going through all of this at age 31 wasn’t ideal. But the experience allowed me to change my attitude toward accepting help when I need it.

The ultimate dream I had, while I lay in bed getting my wound packed by the visiting nurse, was to become a long-distance triathlete. Would this be possible on my own? Could I actually become healthy enough with my Crohn’s to do this?

I began to see that while the sport of triathlon consists of an individual completing the swim, bike, and run on their own, it’s actually a team sport. And this is when I realized that living with a chronic illness is a team sport as well. You can do parts of it on your own, but it’s so much easier when you have the support and help of your loved ones around you.

Here are a few key things I learned during this journey.

Communication is key

When living with IBD, clear communication makes life easier for not only yourself but also those around you. If you talk about what is going on and what you might need, it helps your support team get through the experience as well. They will better understand how they can assist you in reaching your goals. These goals might be getting out of bed after a surgery, going for a walk in your neighborhood, or completing a triathlon — no matter the goal, the key is to communicate.

Your team wants to help

Once you start talking to your support team about what is going on and what you would like to do, they want to help you get there. Have you ever seen those ESPN pieces where they show someone overcoming their disease to make their dreams come true? Next time you watch one, don’t just focus on the face of the person who is overcoming their disease; look at the faces of the people who are helping them do it. It’s amazing to see the pure joy they feel as they see their loved one’s dream come true.

You are going to need support, period

Whether you want to walk around the hospital floor, get back to work, or start a new activity that you’ve always wanted to do, you will need help. I thought I might be able to get through my proctectomy myself, but that wasn’t the case. I thought I would be able to get back to a normal life by myself, but that wasn’t the case. I thought I would be able to become a triathlete myself, but that wasn’t the case either. Even though I would have preferred to do these things on my own, I realized it was going to be easier with help. There are going to be hard days when you need some assistance or a push, and those days are key to moving forward to your goal. Lean on your team when you need to, and when you reach your goal, you’ll be happy you did.

Celebrating with your support team is the best part

I know that many people living with Crohn’s disease might not be thinking about completing a triathlon. But I want to share my experience of crossing the finish line of my first 70.3 half Ironman with you.

Over the course of six months of training, I got the help from my team and loved ones to make sure I was taking care of my body correctly. Race day was not easy — a half Ironman isn’t supposed to be easy — but after completing the 1.2-mile swim, 56-mile bike ride, and 12 of the 13.1 miles of the run, I started to cry. Not just a few tears either, I mean cry. A big reason for this was I knew when I crossed the finish line, the most important people on my support team were there waiting for me. I was going to be able to share this moment with them. Running into their arms, I knew that I didn’t do this alone. We did it as a team. We all took in the moment, and it was one that I will never forget.

When it comes to reaching your goals, you may not be crossing a literal finish line — but no matter what you achieve, there is no feeling like celebrating with your team.

It took me years of trying to do things on my own to realize there was no point in being stubborn. The journey is not going to be easy, so why not accept the help of those around you? I know what you’re thinking: “I don’t want to be a burden to them!” But take the lesson that I learned from all of this: People love you, they want to be there for you — so you aren’t a burden at all. In fact, you probably inspire these people to do more in their own lives.

So don’t go it alone. Talk to your loved ones. Let them know your goals, and let them know you’d like their help when you need it. And finally, tell them how great it is going to be to celebrate together when you cross whatever finish line you set for yourself.

See more helpful articles:

How to Make 'SMART' Goals to Help Manage Your IBD

How Well Do You Understand Crohn's Disease?

Why I Wish I'd Gotten My Ostomy Sooner