Pivotal Moments of Self-Advocacy

Recently I was trying to think about 1 pivotal moment in my life that was impacted by Crohn's disease and shaped me as a person, and I think it's naive to think that there would or could possibly be just 1 moment. Having Crohn's disease has gone from periodic moments to every moment of every day to a lot of moments along the way – and all of which have shaped my perspective on living with IBD.

Reaching for an IBD diagnosis

My journey to diagnosis was long and arduous, complete with many missteps and mistakes. It started with seeking help – and held an implicit bias that when presenting at the doctors office or in the emergency room, I'd be heard out, the necessary tests would be run, and eventually I'd be discharged, leaving with a diagnosis and a plan for better days.

It took 6 and a half years (and too many doctors appointments, tests, and hospitalizations) to reach that moment, and it was much less climactic than you'd have imagined based on the story I'm sharing here. During that time there were so many pivotal moments, moments where I had to intentionally choose not to bury my head in the sand but instead to keep taking 1 step in front of the other, to continue arguing and advocating for myself even when I wasn't sure what stood on the other side of all of that.

A series of moments over years worth of time

Frankly, there were moments during that season where I thought I couldn't fight anymore. Where my resolve and my wit and my tenacity had grown so small that I couldn't face this still unnamed disease for a second longer.

In retrospect, it wasn't 1 pivotal moment that changed how I fought for myself or for this disease. There wasn't 1 specific moment that made me an advocate. It was a series of them. It was every time I was told no when I should've been told "maybe" or "we'll see" or "how about we try..." – those were the things that, in the end, kept me pushing.

Continually fighting as my own self-advocate

Once I transitioned from begging for a diagnosis to a full-blown Crohn's disease patient 7 years ago, there were a few moments that really brought out the advocacy claws in me. There was the time I had to recognize the treatment method I was on wasn't working. It wasn't reducing my symptoms to something tolerable, and I had to fight for a better option.

Or the time that I experienced an extra-intestinal manifestation of IBD and had to bring it to my doctors attention before they would've caught it on their own. This transition taught me up front the value of needing to be my own advocate, and the value in which only I could provide during doctors appointments and conversations about my health updates.

Where I'm at in my IBD journey today

Today as an advocate, I find it pivotal to prepare a situation report before walking into any appointment. Where are my symptoms? What is their severity? Where has my response to medication been? Where have my challenges been? What about my triumphs? What questions do I have? And finally, if this is as good as it gets, will I be satisfied? This is constantly at the front at my mind.

As your own advocate, what thoughts or questions keep you up at night?