IBD Patients and Caregivers Become Desensitized To So Much

Sometimes, I forget how desensitized I have become to certain things until something smacks me in the face.

I recently found out that a friend of mine passed away. We originally connected because of our disease, but quickly learned we had a lot of other things in common. That was about fifteen years ago. Now, at the age of 31, she is gone.

It makes it all so real

I talk about surgeries and organ removal and blood transfusions and being on chemotherapy -like medication as though it’s the norm. We talk about sepsis and say “I almost died” more times than anyone should which makes it so it isn’t a big deal. And then, someone does die from it all and it stops me in my tracks. It reminds me just how real and how serious all I have been through is/was.

I think a lot of our brains have to desensitize ourselves to so much of what we go through as chronic illness patients. It is a defense mechanism. After all, if you are constantly going through so much, our bodies can’t internalize every single blood drawing or piece of bad news as this catastrophic thing. We won’t survive that way because as chronic illnesses sufferers, we have a lifetime of possible negative situations to navigate and contend with. It makes sense we try to just go about our lives as though it isn’t THAT big of a deal.

But it is. It really and truly is!

I was in the emergency room last week for a long, long time. Long story short, my white blood cell count was through the roof and my lactic acid was also very high (can measure sepsis.) I was emptying my ileostomy bag a few times an hour which is a ton for those who are unfamiliar. Both a CT scan and ultrasounds showed something that could be a possible cause for how I was feeling.

I made a choice

I had two doctors wanting to either admit me overnight, then transfer me to my hospital in the morning, or do a direct transfer right then and there. I was told how serious things were and how I could die if I didn’t get more IV antibiotics. I was also told how serious dehydration could be. Let's just say both doctors scared the crap out of me. Even with that, I decided to leave against medical advice.

There was a myriad of reasons for this, but mostly it was because I had been through this kind of thing before and knew what was best for me. It wasn’t good for me to stay overnight at a local hospital with an IV that was barely working. I knew it would only cause me stress and I knew for an absolute fact that I wouldn’t be able to sleep given how uncomfortable I was. I also knew that I am someone who needed a plan since I do have PTSD from being in the hospital so much.

So, despite hearing all the awful things that could happen to me, I went home. When I asked my significant other what he would have done if he was me, he told me he would have done the exact same thing.

My significant other not only has a son who was born with Crohn’s Disease, but he has been through years of dealing with my health issues also. I look at him as someone incredibly smart and perceptive when it comes to medical things. So, to hear that he also felt I was better leaving than staying made me feel better about my decision.

IBD changes us

The reason I share these examples with you is because sometimes, I really have no idea how we all get through so much. I do believe it changes us in so many different ways. I also think the way in which our IBD changes us really depends on US. Not in the “if you keep a positive attitude, it won’t bother you” type of way but in terms of our experiences and how our lives have unfolded.

If you are having a down day, please know how much I understand how things can just smack you in the face sometimes. Most of us spend our lives trying to be strong and just chugging along because we legit don’t have a choice. Just know that if you do need to break down, it is okay. It is even healthy to let go of some of the emotions you internalize.

We may be able to desensitize ourselves from a lot of the horrors we experience as inflammatory bowel disease (IBD) patients but never forget how completely ABNORMAL the things we go through are.