Day 5: How does being chronically ill make you feel?

Defective. Broken. Betrayed. Misunderstood.

Those are the primary words I can think of off the top of my head.

Being chronically ill isn’t something you choose. It’s something that happens to you. And that’s something that a lot of people don’t understand. It’s become a lifestyle for us, but not one of our own choosing. Our diseases won’t go away. It’s not like catching a cold, dealing with it for a few days, and then getting better. We will always be ill.

I wonder how I became the first person in my family to develop celiac disease. I obviously inherited a gene somewhere, but one day a mutation just flipped like a switch and boom, my body started recognizing gluten as a foreign invader, destroying the absorption mechanisms in my gut. So one day, I just broke. My immune system is defective. And those words translate into my psyche of how I feel about my body.

Defective. Broken.

Physically, I have no effects from the celiac disease unless I eat gluten accidentally. Then it’s like the worst stomach bug you’ve ever had in your life. I also have brain fog and numbness and tingling in my hands and arms for a few weeks after. I can’t think straight and I drop things a lot because it affects my fine motor skills. It certainly isn’t a pleasant experience.

While no one knows for sure how endometriosis comes about, I agree with the theory that the tissue is laid down while a baby is being formed in the womb. There are surely other contributing factors, but somehow, I wound up with endometriosis. This is a disease I feel betrayed by. I already expressed my emotions about this in What Once Was Is Now Lost, so give it a read if you’d like.

Endometriosis is also a disease that makes me feel misunderstood. It’s a disease that most people don’t take seriously. They think it’s just women freaking out and being wimpy about the fact that their periods are painful. But endo is so much more than that. It’s pain like you wouldn’t believe. Some women have likened their endo pain to natural labor and preferred the labor. One of the best descriptions of endo I’ve found is this commentary by Dr. Andrew Cook of the Vital Health Institute in his book Stop Endometriosis and Pelvic Pain:

“Having endometriosis is like having tens or hundreds of excruciatingly painful blisters or bee stings covering the inside of your pelvis…now imagine those blisters multiplied and multiplied, spread throughout your internal organs; picture the entire pelvic area red, raw, and sore. When the blisters ooze, they can spread to form other blisters, like poison oak does. Any jostling or movement aggravates the pain.”

Thankfully, my endo is now in remission thanks to the fact that I had excision surgery at the Center for Endometriosis Care, one of the best centers in the world for endo care, and I’m not exaggerating. Thousands of women from over 50 countries have traveled there for excision surgery since it was established in 1991.

I am one of the lucky ones. My worst suffering only lasted 6 months before I had excision surgery. Many women suffer the pain I experienced during that time for years before receiving a diagnosis and proper treatment. But still, endo has no cure. I’m just thankful I feel as good as I do, because it could be so much worse.

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