How Crohn's Birthed My Inner Self-advocate

My IBD diagnostic journey took several years longer than it should have.

I started showing consistent symptoms in the fall of 2009, and wasn't correctly diagnosed until early 2016. During that time, I was knocked down, dragged along the ground, weak and miserable. My body was in complete disarray, and after enough time, my mind followed along.

Before my Crohn's diagnosis

Every time I presented at a new gastroenterologist, or the emergency room, I was met with the same resistance. Are you just here for pain medication? We think this is a manifestation of anxiety. Are you causing your own symptoms? We'd like to assess you for an eating disorder.

For years, I put my head down and tried to barrel through. I'd leave every appointment and I'd come home from every unhelpful hospital discharge more discouraged than I'd started, feeling like I'd never find relief. If nobody believed me, then nobody would help me. And if nobody helped me, then how was there any hope of getting better?

I was tired of doctors not believing me

At some point, I reached a wall where things changed. My protective, animalistic instincts took over. And seemingly overnight, I became a fierce, relentless advocate for myself.

I began doing excessive amounts of academic research into the GI system. I asked intense, well-articulated questions to my providers. I reached out to new providers, not as a new patient, but for a consult. I asked for additional testing. And eventually, I reached a diagnosis. A treatment plan. Relief. Better gut health.

This inner advocate – she had no idea she was just beginning her work.

Being hospitalized

She had to show up again later that year, when I started working with a new rheumatologist, and had to ask with conviction if the symptoms I'd lived with since childhood could have another look. This led to my rheumatoid arthritis diagnosis – which, not unlike my Crohn's disease diagnosis, took many years longer than it should have.

My inner advocate was released much quicker in early 2022, when I was hospitalized with what I correctly identified as adrenal crisis. She fought hard for me to obtain the testing for an adrenal insufficiency diagnosis, and a provider that was willing to take on a complex medical patient.

And that advocate has had to show up several times in the last 12 months. I've navigated the need for emergency spinal surgery, being hospitalized with RSV, diagnosed with asthma as an adult, broken 3 bones in my foot, managed rhinovirus, bursitis, several intense asthma flares including 2 trips to the emergency room for trouble breathing (so scary!), and most recently, an urgent care visit turned ambulance ride turned hospital admission for pneumonia.

I have to be a self-advocate with Crohn's

Without the long, agonizing, emotionally painful journey to my diagnosis with Crohn's disease, I don't know if my inner advocate would have been born. During the weeks and months I've gone without acute illness or injury, my inner advocate has been vigilant on watching my IBD symptoms.

When I'm spending more time than usual in the bathroom, or my appetite is cut, when my pain increases or I'm more nauseous than usual, my inner advocate tends to yell out something like, "Hey, pay attention! Make note of this!"

She makes me more aware, more on the ball when it comes to promptly taking as needed medication to manage symptoms, or reaching out to my GI doctor for support. She makes me ask more questions, think more thoroughly about what I'm being told or advised, and notice more of what I'm feeling and how my body is responding.

I know my body best

And the most important thing my inner advocate has done: she has both taught me and continues to remind me that I am the only 1 experiencing my body, and that it's my duty to communicate as openly, honestly, and descriptively as possible with my care team so that they can address the true problems at hand.

My inner advocate prevents me from being dismissed as much as I once was by medical professionals, and she also helps me bounce back faster when it happens in present day.

Have you noticed an inner advocate emerge during your Crohn's or colitis journey? I'd love to hear about them below!