The Thoughts and Wishes of an Invisible Illness Patient

Happy Crohn’s and Colitis Awareness Week! The theme for Awareness Week this year is “Making the invisible visible by sharing a day in the life with IBD.”

In today’s blog post, I share my innermost thoughts and wishes as someone living with an invisible disease.

Jenna resting her head on her hand as she smiles at camera from outside patio

Life with Invisible Symptoms

My colon was almost destroyed because of my invisible symptoms. Well, the seemingly invisible gallon of blood in the toilet after a bowel movement was far from invisible to me, but when I—shocked and worried—brought this up at my local urgent care, they said, “It’s normal for people to see blood in their stool on occasion” and that “I’d be fine.”

They told me to give it a few days and it “should go away on its own.”

Even before my IBD journey officially began, I quickly learned to be my own advocate: I filed the Urgent Care’s diagnosis into the trash bin in my mind, and proceeded to see my primary care doctor.

I listed my symptoms to him:

Blood in the stool
Embarrassing urgency
Extreme abdominal cramps that worsened after I ate

I saw his eyebrows jump together. And then I thought. “Oh, this is serious. He never does that.”

He referred me to a GI, who saw me the following week. After a colonoscopy, I was immediately diagnosed with ulcerative colitis.

Life with Invisible Comorbidities

Lately, I’ve been struggling with lightheadedness. Extreme headrush every time I so much as stand up from my chair.

Once in the middle of the night, I rose to use the restroom and became so lightheaded that I nearly toppled over onto the floor. (Thankfully I caught myself on the wall.)

Recently, my bloodwork showed that my hemoglobin and other anemia-related tests were low. When I brought this up to my GI’s nurse, she called me back to relay his message: “He doesn’t believe your symptoms can be that bad since your blood work shows you might only be slightly anemic.”

(Okay I guess I’ll just Facetime you in the middle of my next fainting spell. Is that what you want?!) But I digress.

Trust Goes a Long Way

There’s a question that I mull around in my head whenever I write about living with invisible illness. The question is: if I could choose, would I rather have my IBD symptoms be invisible or visible. And truthfully, I go back and forth. I don’t know if I really have an answer.

I think what it comes down to is that I wish I was believed.

I wish that the workers at the Urgent Care trusted me. That they realized how worried I was and how I deep-down knew, that blood in the stool was, in fact, not normal.

For people like me with IBD, it’s not uncommon that if people don’t see the combination of symptoms and hard scientific numbers, they think you’re lying, over exaggerating, begging for attention, or whatever else.

Even if my fears turn out to be unwarranted or I am wrong about something, I wish others would at least believe in my concern, trust that worry line between my brows.

Having an invisible illness is hard. Sometimes, people won’t believe how tired you are, how in pain you are, how sick you are.

How to Support Those in the IBD Community

So, I guess what I’m trying to say today, on day one of Crohn’s and Colitis Awareness Week, is that living with an invisible illness is emotionally draining. We in the IBD community aren’t looking for pity—we just want the trust of our medical team, our friends, our family.

We crave to be believed when we are going through one of the toughest fights of our lives.

Trust is the foundation for support and support gives us the strength to fight another day.