Welcome back to Part 2 of The Comical Colon’s 5-Year Chronic Illness Anniversary Series!
This is a blog series where I share the five most significant life lessons that ulcerative colitis has taught me.
Click here to read Lesson 1: Accepting Your Chronic Illness Isn’t a One-Time Thing
Lesson 2: Someday, your diagnosis won’t be about you anymore
The first three-ish years of my life-changing ulcerative colitis diagnosis were focused on me…as it should be.
I was teaching myself how to cope with fatigue,
understanding the new limits of my body when it came to sleep and exercise,
learning how to incorporate self-care into every day,
dealing with medication side effects and flares,
missing class and work to go to doctor appointments when all my medications eventually failed,
learning how to manage flares while working and going to school—sometimes all at the same time.
You get the point. Because like anything else, there’s a steep learning curve to understanding your body after being diagnosed with a chronic illness.
Then, things began to shift for me
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 induce occasional chuckles.
This is the cycle of patient advocacy
And 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 and knowledge as we can.
Then, we feel so full that we choose to pour into others. It’s a beautiful cycle.
Some of us become politically-inclined patient advocates.
Some of us share our stories on a blog or vlog.
Others start podcasts or write books.
Some 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 basically an endless list of 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, silly! 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 or about my body. 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.
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.
I’d love to continue this conversation in the comments!
- If you share your story on a platform, how long did it take you before you took that plunge? (Also, leave me your website link or social media handle so I can follow your story!)
- If you don’t share your story on a platform, do you want to in the future? Why or why not?
Find me on social media for more inspo!