Monday, July 8, 2013

Post #107: A failure to communicate

Here comes the bride.....all dressed in CONTROVERSY

This week has been hectic. I have family visiting-two adults, two young kids-and it's been a whirlwind of sticky apple juice fingers, trips to visit the pear trees in the backyard (or parrot trees, as one kid calls them), dashing around the playground, touching ALL THE THINGS at the children's museum, dark chocolate birthday cakes, and organic mac&cheese.

It's not the mess or the chaos I mind, although I have to frequently resist the urge to wipe down all the surfaces of everything in the house (how did cherries get smooshed into the upstairs carpet?!)-it's not the lack of privacy (closed bathroom doors? ha!), or even the invasion of my personal space, something I am usually wary about. When a tiny person wants to snuggle with you on the couch and watch nature programs, you stop worrying about the fact that he probably didn't wash his hands the last time he peed and just let him curl up next to you and put his little feet under your butt, to keep them warm.

What has me kind of depressed is an interaction with one of the grown people. Somewhere along the way, I picked up a flu like illness-my joints are swollen and painful, and my throat feels as though I've been gargling with glass chips. I'm guessing that despite copious amounts of hand sanitizer, my immune system was no match for the DECADES worth of germs coating every surface of the children's museum, and someone probably sneezed on me when I wasn't looking and there you go (update: I have strep throat! ugh).

Naturally, all of this occurred half way through a jam-packed visit with planned outings to the aquarium and zoo, dinners out at favorite restaurants and various other adventures. I could feel the illness coming, and as I hobbled out to the patio my family member asked what was wrong, and I told her.

"Why are you sick??" she asked in an accusatory tone, her brow furrowing in annoyance.

I was in no mood. I believe I told her to ask my mucus, because I had no idea how or why (really?!) I got sick.

Later, as I was curled up on the couch watching reality bridal TV (no judgement! I'm sick!), my temperature rising, she came and sat down next to me. There was a story about a bride with an autoimmune disease trying on dresses. She had huge bruises up and down her arms, and she talked about how from day to day, she didn't know if she would lose weight, gain weight, have hair, have no hair, or be covered in sores.

She tried on dress after dress with one particularly large sore on her arm, something she was obviously self conscious about. Simultaneously, we had opposite reactions; I commented, "Poor lady, that looks painful" while my family member said, "Ewww, gross, why are they showing that?"

It was then that I had a moment of realization: this family member will never, ever understand my Crohn's.

It may seem like a leap, but I realized she just doesn't have the compassion chip necessary to process chronic illness. It will never be anything other then an imposition on her, an annoyance, something to be irritated or disgusted by.

Some people try to be empathetic but just can't understand because they have no experience with chronic illnesses, and some don't even try. They may be sympathetic on the outside, but on the inside they are mentally watching the clock and waiting to change the subject. Maybe this is because of discomfort, or impatience, or the feeling that chronic illness is an inherent weakness (WHY are you sick??)-but they will never approach the issue with anything other than their biases and impatience.

I had been trying to explain things to this particular relative, to bring her into my experience, because it's an important part of who I am right now. That stops today. It's kind of freeing to stop putting myself out there, making myself vulnerable, because I know that she doesn't care to understand.

As much as I would like to, I can't simply excise this part of my life. Since my diagnosis, it's frequently been the most time consuming, emotionally draining, physically exhausting reality in my life. I think this family member has been waiting for things to go back to normal (that's what I want too!), but in the meantime-this is who I am, and this is what I'm going through. 

I won't pretend that these things aren't happening. I won't sugarcoat the truth. I don't have a choice about going through this, but people in my life do have a choice about whether or not they want to hear about it. I forget that, as I tend to go with a full transparency approach. But in the future, I'll be more watchful and wary. I guess I just assumed that people who cared about me would want to know, but as with anything else, I guess there's an interest threshold, one that i have apparently exceeded with this particular person. 

This person has a choice. I keep telling myself that. 

But it still feels like rejection, of me, my disease, and the way I live my life.