To truly expose the real me – #BeReal, it may be easier to explain who I am not.
I am not a medical statistic.
Oh, sure, I have spent much of my adult life sitting in sterile rooms, talking about probabilities and survival rates, but a patient is NOT who I am. If any of those blank faces in lab coats were to look up from my chart, they would see an outwardly calm, inwardly terrified woman who also happens to be a mom that needs to get home for carpool. And please don’t call me an “interesting case”. I may be interesting, but that has nothing to do with disease. Sure, lots of things have gone wrong with me physically, but I’m not the sum of my parts (the ones I have left anyway). The weird thing is that sometimes it feels like the more things get removed, the more the space there is for my soul to expand. But for the record, I’m keeping the rest of my organs, thanks.
I’m also NOT a figure on the liability side of an insurance company’s balance sheet (well, maybe I am a little, but don’t treat me that way, regardless). Repeatedly canceling my life-saving medication because it is too expensive only makes me stronger in my fight for survival. Those judging me as “not cost-effective” have made me more tenacious, and my voice more powerful as a result.
Finally, stop telling me I’m sick. I will never be defined by disease. Illness is something I am going through, it is NOT who I am. I thank you for your concern, but can’t we talk about anything else? I don’t need your pity either; I’m far from pitiful. I may be weaker physically at times, but the strength of my spirit will never diminish because of some stupid diagnosis. In reality, I’ve become more of who I’m supposed to be because of my health.
If I had the opportunity to learn and grow through illness again would I shout, “One more round” at a Karmic Happy Hour? Hell, no. But we are given our lessons a specific way for a reason, and I intend to make the most of mine, while being the most authentic me in the process.
What does Being Real mean to you?
Sharing my journey, in all its glory, is about as real as it gets. It means being brutally honest with myself and others. When you have a chronic illness, you have great days, and days that really suck, physically and emotionally. All are just a moment in time and part of the ride.[bctt tweet=” Being real means going with the flow while trying not to fall out of the boat.”] It also means never losing my sense of humor in this messy process. Real is taking life by the balls and having some fun with it. Even if the fun meter is so low it includes making sculptures with the blended cheeseburger and potato salad the hospital is serving for lunch (yes, blending whole meals is actually a thing and every bit as gross as it sounds).
How do you think people see you when they only have an image to go by?
I think people are confused. If you look at my medical notes and labs, you would think I had one foot in the grave. Then I come running in the room in tennis shoes because I just came from the gym. I hear, “You don’t look sick” a lot. I’ve actually been sent for a psych evaluation because one doctor thought I was making symptoms up … seriously? Then there are days that I’m so weak I can barely walk and my speech is slurred. People wonder if I’ve been drinking. They don’t understand the unpronounceable autoimmune disease I have. Why should they, I don’t really get it myself. Invisible diseases are tricky because every day can be different, and there isn’t much rhythm. Even today I had to run my errands early and then cut my cardio short because my nurse is waiting to hook me up for a five-hour IV. Like I said, very confusing.
And what do you think people are most surprised to discover about you?
I am not at all invested in my health issues. That doesn’t mean I don’t take great care of myself. I have a clean diet, I exercise as much as I can, I meditate and all that fun stuff, but I don’t think much or talk about the four cancers and two autoimmune diseases I have had unless there is a specific reason for it. Some love illness as a topic of conversation; I find it kind of boring—especially if it’s mine.
reason for it. Some love illness as a topic of conversation; I find it kind of boring—especially if it’s mine.
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