person looking into a mirror and their reflection is a digestive tract

Does Your Disease Define You?

Truth: when I was first diagnosed with Crohn’s, I was in complete denial. While my diagnosis story is not like most (I was diagnosed before having symptoms), I find that many patients are in denial of having life-long chronic disease upon being diagnosed.

So, what happens to make patients suddenly become defined by the disease? Why do we first think, “I don’t know if I can do this because of my Crohn’s” or use it as a reason to not take a vacation, go out to dinner, or try something new? In essence, why and when do we decide that this disease defines us?

In denial after diagnosis with Crohn's

As I mentioned, I was in denial of having my disease for a while—like for years. This was not a healthy approach to dealing with having Crohn’s, but the bright side was that I didn’t think twice about going somewhere or trying something because of my disease. 

Not only did I not let it define me, I lived as if I didn’t have it at all. And it worked for me for a while.

Two years after being diagnosed, I had my first major flare that left me hospitalized for three weeks with an abscess on my small intestine. It was then that I had to go on a biologic and was introduced to my local Crohn’s & Colitis Foundation chapter.

Refusing to make adjustments to my lifestyle

I suddenly was a “Crohn’s patient” whether I liked it or not. I dipped my toe into the whole Crohn’s community and paid a small fee just to have my “I Can’t Wait” card.

And, at the age of 25, I refused to let it define me and would pride myself in having a chronic disease yet not having to make adjustments to my lifestyle because of it. Again, that wouldn’t last long.

Over the next two years, I dove head first into the Crohn’s community and was very much screaming “I am a Crohn’s patient!” but for all of the wrong reasons.

I used it as an excuse not go to out or as an out when I didn’t feel like trying my best at work. It was as if I threw myself a pity party just because I was living with this chronic disease, which was doing no one justice so that had to change.

Allowing Crohn's or take over and define me

I then let it define me for a positive reason, but that did not do me much justice, either. Constantly submerging myself in the symptoms, talking about it every chance I got and staying stuck in a cycle of talking about it even though it was in a positive light constantly kept it at the forefront of my mind.

This left me focusing on that rather than every other aspect of my life. I had to find a healthy balance of acknowledging my disease, letting it be a part of my life, but not letting it dominate my life.

Finding a balance between Crohn's and other aspects of life

Now, I make it a part of my life, and part of who I am, but it by no means defines me. I also use it for a positive reason in that I share my story to inspire others and help those who feel defeated by their disease.

I also recommend others not let the disease define them because it is when you get focused on what is going wrong that you are blind to what is going right.

And, while it is easy to be burdened by our disease, know that there is so much more to you and your life than Crohn’s so it is time to focus on those aspects and not let the disease define you.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.