Chronically Deflecting

Serious situations are serious.

That's a sentence I repeat to myself when people get annoyed with my reactions to the information they are giving me. I don't handle serious situations very well because they are, in fact, serious, so I joke. I take hospital selfies, I joke, I laugh, I giggle; when I am uncomfortable or sad I deflect.

I don't know when this became my coping mechanism; I have done it for as long as I remember. People are uncomfortable when they find out that I am sick because I don't immediately LOOK sick. It's easier if it's not serious, so being the massively overcompensating people pleaser I am I try to make it as easy as possible. "Oh yeah my throat is mostly scar tissue due to years of untreated eosinophilic esophagitis and I can't eat food but plus side, built-in diet for life!", "My lips are swollen due to a minor allergic reaction that means my face and lips will swell for at least a few hours if not a few days. Angioedema bonus: it's like lip injections but without the chemicals or cost!" If it's a joke, it's funny. If I joke about dying, it's funny; it's not a thing that really happened. I deflect.

People tell me I need to recognize that I am strong, that I am inspiring... I don't feel like either of those could possibly be true. I am simply waking up every day to the struggle of reality (that is, if I have been able to sleep). I wake up to the reality of being alone in this, because no matter what even the people who are there for me can't always be there. They have REAL life; real work, real families, real reality. My reality is being sick. Each morning I wake up weighing the sickness and the health and reminding myself that this is not a reality that anyone is going to willingly choose to be around day in and day out for the rest of my life. The realty that the rest of my life might not be that long; because I am struggling to get out of bed each morning and oh yeah, there's already that one time I died, so it's not outlandish for me to think about dying every time I go to bed or every day that I wake up in pain and with a fever of unknown origin. It's just hilarious to me that they found a mass on my liver while doing a scan to check for a pulmonary embolism because OF COURSE they did. If it's not hilarious, do you know what it is? Reality. Really really real reality; and that is really ridiculously terrifying. I can't handle that reality all the time; it's my reality when I am alone. So when I am with people, I deflect. I make it easier for them to make it easier for me. I am not in control of any of this and that makes me feel selfishly helpless and I don't like that feeling.

I think what makes it even more impossible to deal with is the rarity. It’s not that I don’t understand that eosinophilic esophagitis is becoming recognized more and more; that it has gone from 1:10,000 to 1:1,000 – it makes me genuinely happy that this is the case. It’s the fact that beyond the EoE they can’t seem to diagnose the other issues that are happening. They recognize that I had eosinophilic infiltration of the lungs two years ago. They recognize that my blood eos have measured high. They are now calling my heart event eosinophilic infiltration of the myocardium. That’s cool – what is going on?? Why is this happening? Why is it that my Mom can get upset that the emergency personnel don’t know what eosinophilic disorders are and be told by someone IN the EGIDS community that it’s because it is not important for them to know that because eosinophilia is not life threatening? Tell that to my body; tell that to the fact that I was treated as a drug overdose, then sepsis, then a viral infection; and a whole MONTH after my heart stopped they decided to run tests to see if it was maybe eosinophilic infiltration. If it wasn’t so rare and so debated then the cardiac MRI that a team of cardiologists argued over would have been pulled sooner and examined for the right things, namely what they finally looked at it for; eosinophilic infiltration.

It’s amazing that people within even a community of rare diseases can disagree on the proper amount of education that the medical community should receive but that and spending another night in the ER with doctors who didn’t understand because I kept vomiting up my medication which leads to more chest pain because, I don’t know; my heart stopped recently and hurts a lot and when you vomit your heart and chest pain meds (best miracle ever), it made me realize that maybe I am a little bit tougher than I give myself credit for. The fact that when she came to give me my discharge papers my nurse sat down to give me a talk about how strong she thinks I am for dealing with my "stuff - because you have a LOT of stuff" - that hit home. She's an ER nurse and she sees a LOT of stuff; to take the time to tell me my attitude was impressive means something to me. I don’t know if I will ever accept “inspiring” as a word to describe me but I might accept that I am strong. I am still going to deflect and joke because it makes things a little bit easier when you spend all of your days getting poked and prodded and messed with, filling out the same forms over and over because your doctor got to the end of his knowledge but knows something is wrong so he’s going to send you to another specialist who may or may not know what’s going on and may or may not send you to someone else. Plus side, I am excellent at filling out forms and I get to travel!

What it all means is, if there is ever a moment where I am truly sad about all of this, where I let myself accept it or understand it or talk realistically about it... Don't deflect. Don't tell me to be positive about it, and that positive thinking will help me. Don't give me inspirational quotes and examples of how you relate to me because you were recently on a gluten-restricted diet for Lent. Don't tell me that we will fix it because in reality, this is a rare disease for which there is no cure. If I take a minute to let it be real, I need that minute to be real. I need you to be real with me. And I probably need a hug, or a comforting touch, or someone to hold my hand. Let it be real, and let me be overwhelmed by it. I'll come back around, just let me.

**Please take a moment to recognize all rare diseases for World Rare Disease day. Visit Global Genes on FaceBook or at globalgenes.org -- and please consider making a donation to an organization dear to my heart: CURED. They have donated so much towards research for eosinophilic diseases and are making a huge difference in the EGIDS community. You can donate at curedfoundation.org.