Living with Invisible Illness | A Personal Story

It was my first day back at university after a seven-day hospitalization due to an infection of a JP drain that was surgically placed through my abdominal wall to drain a recurrent, grapefruit sized inclusion cyst. I had had a particularly discouraging hospital stay this last time, because unlike other drains I had had that got infected, this one had not drained a substantial amount before it was pulled out of my body. This means the infection, drugs and pain had been for nothing. I still had a large, painful collection of fluid, and now also had an infection, but I looked fine …

I always looked forward to going back to school after a hospitalization because it gave my mind something else other than my illness, surgical procedures and complications to think about. It was finals week and I loved it. Unlike my body, which I have no control over, I felt as if I could control my grades by studying hard. It distracted me from the cruel reality that every morning when I roll out of bed and look in the mirror, I don’t see a skinny or fat or pretty or ugly woman. I see a body that has continuously tried to kick me out and kill me off for seven years. I see a vessel for my mind and soul to live in, but this vessel doesn’t want me in it. How can you ever feel like you’re home, when the only home you’ll ever live in doesn’t want you in it? This is how having an auto-immune disease has always felt to me. It’s not a virus or bacteria that is causing the pain. It isn’t an injury and it wasn’t an accident. My own immune system, the one that has always been mine, one day decided that my colon didn’t belong in my body any more… so it started to kill it, in turn starting to slowly and painfully kill me, but I look fine …

After taking my final I slowly walked to the bus stop. I popped a Percocet in my mouth, but knew it wouldn’t touch my pain for another 20-30 minutes. I winced as I stepped onto the full bus and knew the only small amount of relief I would get would be if I could sit down. There were no seats, and I started to panic. The idea of standing in pain on a bumpy bus made my eyes well with tears. I turned to the closest person sitting and asked him if I could please sit down. He looked up at me and said “I was here first. That’s awfully entitled of you to ask for my seat.”  I turned away, closed my eyes, squeezed my tears out, gritted my teeth and tried to breathe through the feeling of a knife being jabbed into my abdomen and twisted. This is not the first or nearly the last time I would experience this. Perhaps had I had a cane, or a scar, or had lifted my shirt to expose the piece of my own intestine sticking out of my abdomen he would not have called me entitled. Instead, I felt guilty for asking for a seat designated for people with disabilities. People like me. But I looked fine …

The inaccurate stigma about illness perpetuated by media is so ingrained into our society that if you are not visibly ill, you are obviously not that sick. You can’t see people with Cystic Fibrosis lung infections, you can’t see people with cancer’s cell mutations, you can’t see people with diabetes blood sugar drop, and you can’t see people with Inflammatory Bowel Disease immune system attacking digestive tract cells.

Turn me inside out, and you would have a completely different story than what you see on the surface. You would see a  digestive tract changed since the one I was born with. You would see sclerosis, cysts, ulcers and other things I’ll spare you the details of. Perhaps what makes me most sad while writing this blog is that I still feel the need to say all of this. I feel as though I have to prove my pain, illness and disability in order to be considered part of the chronic illness community by the able-bodied community because the majority of the time I walk around looking well, and luckily, after surgery even feel relatively well considering the stuff going on inside of me! This makes me feel so alone and misunderstood by most when I am not okay and when my illness rears its ugly head…because I look fine.

I share this, not because I want sympathy and not because I’m angry at the man who didn’t allow me to sit down, but because I want change. If I have learned anything over the last seven years of hospitalizations, infusion centers and doctors’ offices, it’s that you can’t judge a book by its cover. It’s something we’ve heard so often, but it’s something that is so easily forgotten. I hope this blog can inspire some to look a little deeper than the complexion of someone’s skin or the thickness of someone’s hair and to truly listen. Empathy and the willingness to try to understand someone’s pain (be it physical or emotional), I believe, is one of the most wonderful and love-filled gifts you can give someone. I guess to sum it up in one quote:

“Be kind, for everyone you meet is fighting a hard battle.”

Suggested reading: The Spoon Theory

For more information, see related articles and resources here:

• Mental Health with an Ostomy
• 6 Things I Wish Someone Had Told Me About Ostomy Surgery
• Things That Still Bother Me Since Getting Ostomy Surgery – And How I Resolve Them
• Bad Day Coping Mechanisms
• Notes from the Hospital Bed | Care Team Successes and Failures | Episode One