IT'S NO BIG DEAL
I have some of the same things this woman does. And because I have been diagnosed as physically disabled 18 years (NOT MY "CHOICE"!!! either) some people comment on how well I "adapted" and "cope" because I'm giving them the impression "it's no big deal"...
Well IT IS A BIG DEAL... it cut my living a decent productive life off at the knees... in my 30s!!!
From the great site: BUT YOU DON'T LOOK SICK!
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Lately I’ve been getting the impression from some of my friends that maybe my growing list of chronic illnesses is no big deal. No one is actually coming out and saying these words, but that is definitely the feeling I’m getting. This point could be debatable. Maybe they think that. Maybe I’m projecting. But this is how they are making me feel, so right now this is my reality.
And it’s fine really. I know that no matter how much education I do or how much awareness I try to bring, I am never going to change what people think. And that’s ok. What is NOT ok is letting those negative nellies turn my own brain against me. With all of this swirling around me right now, I actually started to agree with them yesterday. My brain was actually thinking things like: “ya know, maybe I’m not that sick,” “I haven’t had a bad infection in a while,” I haven’t been hospitalized recently,” “ya know, maybe they are right- maybe all of this isn’t such a big deal after all.”
What a crock. And what’s worse, it was coming from my own head. I felt like I was being brain washed to come over to their side - the not a big deal side. How did this happen? How did I let this happen? Perhaps it’s not a big deal that I take 14 prescription pills per day. Maybe it’s not a big deal that I take shots into my stomach twice a day. Maybe it’s not a big deal that I have to spend one day per month at the hospital for an eight hour infusion for the rest of my life. Maybe they’re right. No big deal.
So after I realized that my own brain was betraying me—adopting the opinions of others, I cried it all out, waved the BS Flag, and gave myself a good talking to. Only I know my history. Only I go to these doctor visits alone and hear the harsh realities. Only I remember all of the infections, hospitalizations, trips by myself to the ER when my husband was traveling for work, the surgeries, the pain, the fear and the isolation. Because no one who’s not a spoonie gets it. They can’t. They have no idea. To them, it really isn’t a big deal.
I know this probably can never happen, but just once I’d like one of these naysayers to spend a month in my shoes. Oh hell, even one day would work. Just one infusion. I’d like them to have to schedule the infusion around work, around vacations, around national holidays- all while making sure they get it in time to not delay the treatment and become sick. I’d like them to have 6 needle sticks by the nurse for the IV since after so many years; their veins’ scar tissue is building up. I’d like them to sit staring at that white wall tethered to an IV pump for eight hours. And maybe their IV will infiltrate. And then I’d like to see them spend that infusion weekend in the bed reacting, on pain killers and anti-reaction meds, oftentimes with migraines and vomiting. Because you know what? I think with one experience of all of that, suddenly they just might realize that having many chronic illnesses is a big damn deal. Maybe for once, they’d finally come over to my side.
But again, I can’t be angry with these people. I cannot control what they think. I cannot control that they many never experience anything like this. So there’s no point in being upset with them. But I really should be upset with myself. I know better. I need to stay true to myself. I need to not let these people affect how I see myself. Even though I don’t look sick, I damn well know that I am sick. I’m never going to forget it again. Because you know what? I’m sick. And it is a big deal. It doesn’t matter who knows it, as long as I know it.
Kelly lives in Atlanta with her husband and kitty. She developed PIDD in 1995, went undiagnosed until 2007, and has been receiving IVIG ever since. She also has: capillary hemangioma of the colon, chronic anemia, Hashimotos, insulin resistance, palindromic arthritis, and a host of other dxs. By day, she’s a Senior Project Coordinator and a Zebra. She can be found lurking on twitter, @collie1013 and Facebook, Kelly Jaeckle Clardy.
©2010 butyoudontlooksick.com
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