Many chronically ill patients have recently written articles titled, "But You Don't Look Sick." I get it. And now, I feel compelled to add to this theme in my own words. Why? First off, to clear up some confusion surrounding my story, and secondly, to use my voice as an advocate for those suffering with disease, day in and day out.
Lately, my days are filled with pain, nausea, and fatigue due to multiple malfunctions in my body. This is probably not news to you, as I have used words to describe these maladies on more than one occasion. Common to all of my symptoms is this: Aside from an insulin pump that makes an occasional surprising appearance to the world out the top of my shirt, and those times when close friends see me hunched over in agony on the street, evidence of my ailments and symptoms are hidden beneath my skin. Unless of course you see me naked. (And THAT's not happening!) Then, you would see some war wounds in the form of surgical scarring.
But what you do see is this: I am not bleeding. I am not missing a leg. I am not in a wheelchair. I do not have an oxygen tank.
You will also notice that usually I am wearing makeup. I am in a dress or heels. My hair is done.
I can't tell you how many days just the thought of that beauty regime overwhelms me. The time and energy it takes to "not look sick" is exhausting. But for me, this is one way of hanging on to the health I still have.
Why not wear some makeup? Why not wear stylish clothes. I can't very well walk around naked, can I? So they might as well be fashionable.
I love making memories - with Don, my family and my friends. Even with strangers.
So...
On days I am capable, we explore the world and soak it all in. This does not mean I am not symptomatic. This means, I have a bit more energy than the day before spent in bed, to get up, get ready, and fight against those symptoms with all I've got. I haven't much endurance or much strength, but my eyes can still see and ears can still hear and my fingers can touch and my mind (and my camera) can capture life as it unfolds.
And.
My face still works (yay!) so I can smile as I (and the camera) take it all in.
Of course the pictures you see of our travels online are goofy and fun and posed and romantic. Do you really want to see pictures of me down for the count in bed? Or at yet another doctor's appt. getting tests? Of me hanging over the toilet bowl retching? I doubt it. Let me spare you that.I want you to see me as happy and fulfilled, because aside from a very difficult health situation, I am.
And if you think me to be vain, so be it. For me, looking my best is a mental exercise in fighting my disease and not giving in. I emotionally feel better when I look my best. And if I can't physically feel better, why not take the emotional gain?
So here's my point: Please don't assume that if a chronically ill person looks good, they feel just as good. Please don't put unrealistic expectations on their capacity to join in on physical activities, as simple as they may be for you. Never try to guess how a person with chronic illness is doing. If you care, just ask. And know that some days the answer will be bleak, some days vague, some days more positive than reality and sometimes, it will honestly be good.
Yes, I know I don't look sick.
I'll take that as a compliment.
