When Your Diagnosis Isn’t About You Anymore (And Why It’s a Good Thing)

Celebrating my five-year ulcerative colitis diagnosis this year, I had an epiphany. I realized that my diagnosis isn’t about me anymore. I’d started out sharing my story to find community and emotional healing, and now I share my story to help others. If you find yourself in a similar boat, keep reading to see why it’s actually a good thing that your diagnosis isn’t about you anymore.

When My Diagnosis Was About Me

The first three-ish years of my life-changing ulcerative colitis diagnosis were focused on me…as it should be.

I was spending time finding community, writing for my emotional health, learning things from others, and understanding how to manage my medication and flares.

Because, like anything else, there’s a steep learning curve to understanding your body after being diagnosed with a chronic illness.

When Things Started to Shift

But in March 2018—three and a half years after my diagnosis—I felt like I finally understood just enough about my body and my illness to do something with what I had learned instead of keeping it in my brain.

And that’s when The Comical Colon was born!

You see, I realized it was time for me to start sharing everything I had learned over the years. I couldn’t keep everything to myself anymore, and the idea of sharing my story finally started bringing more excitement than fear.

So, I created this blog to share my journey with others. To (hopefully) give others hope, provide insight, and encourage occasional chuckles.

The Cycle of Patient Advocacy

I think this is the case for many people with chronic illness:

We spend however long (I say “however” because it varies greatly from person to person, and there’s no right or wrong length of time) navigating our new normal and soaking up as much information and education as we can.

Then, we feel so full that we choose to pour into others. It’s a beautiful cycle.

We might focus on legislation and policies, or write books, or start podcasts, or become entrepreneurs. Others will work for medical, healthcare, or pharmaceutical companies to improve policies, products, and systems so they can better serve others with chronic illness.

There’s are endless possibilities.

What You Need (And Don’t Need) in Order To Share Your Story

Do you need to know everything there is to know before you can share what you’ve learned? Absolutely not! That would be impossible. So don’t let that hold you back from sharing your story.

When I started The Comical Colon, I certainly didn’t know everything about inflammatory bowel disease. In fact, when I started this blog, I was in a flare!

You don’t have to wait for remission or for “the perfect time” to start your advocacy endeavor. There will never, ever be the “right” time. The only thing that comes closest to that is when you feel ready to share your story and you have an outlet to do so.

It’s a Great Thing When Your Diagnosis Turns into Something Greater Than Yourself

Ultimately, we know that each person’s trek through the diagnosis of a chronic illness is incredibly unique.

So take as much time as you need to let it revolve around you! And don’t let yourself feel guilty about it. It NEEDS to be about you at first. You need to take care of yourself before you can help others.

And when that time comes for you to share with the world what you know and what you’ve learned, whether it’s tips about:

bowel surgery and the ostomy life,

or simple, belly-soothing recipes,

or setting up a meeting with your state representatives to talk about step therapy,

or properly giving yourself enemas,

it is such a POWERFUL and EMPOWERING thing.

It’s kinda like chronic illness is turning us into a little army and sending us into different spaces to—in our own little ways—change the world.