cherryperson: I’ve been putting off writing about this for some time because I’ve been s

cherryperson:I’ve been putting off writing about this for some time because I’ve been so sick, and I’ve been telling myself that my mental acuity will come back any day now, and bloody hell if I don’t want to be Witty, damn it. As the days creep on and my medical problems continue to cascade into a tangled heap that a naughty kitten would be proud of, there comes a time when you just have to suck it up and do your best. Hospital Glam: many months ago a wonderful friend in my very close-knit support group started putting a name to something that I had naturally developed a habit of myself. That friend is karolynprg and you can see her very own hospitalglam blog. As a retired professional photographer (and an on again/off again self portraiteur), it was natural for me to turn to a camera as I found myself spending more and more time in hospitals and doctors offices. Without knowing it I was taking back some of the autonomy that you lose very quickly as a patient. It became a habit, something that I couldn’t resist… Finding a mirror or some other way to snap a quick selfie. This developed into dressing well; trying to have fashion sense again. As someone who has had many periods of debilitating illness, and varying degrees of disability throughout my life, plus a weight that has fluctuated 50lbs or more because of said illness, the clothes I wore often became last priority during these times. At other times, when I was feeling less sick or in pain*, I would pride myself on having a very particular aesthetic; I would find joy in trying to find a balance in all of my interests and reflecting that in my clothing. (*with Ehlers Danlos Syndrome you are never pain or symptom free, our normal is just less-so). I don’t remember when the actual turning point was. Maybe it was after my 50th physiotherapy session and I was sick of being stuck at home the rest of the time and only ever leaving the house in workout clothing, that I started experimenting with said clothing to see if I could make it more ME (I am NOT an athletic gear type of person). No offence to those of you who love your yoga pants or your jogging bottoms, but it just doesn’t really fit into my self image of a dystopian, but feminine android, displaced from the future! The change in myself and how I handled my medical appointments was apparent: I had so much more confidence and I no longer felt like it was fair or right for doctors or other medical professionals to treat me like a child; like a subordinate. It was around this time that I started to think more actively about healthcare. I no longer wanted to wallow in the fact that the modern healthcare system is cack-handedly retrofitted into a much older system where patients weren’t allowed any voice whatsoever; I wanted to do something about it. The prospect of changing an enormous bureaucratic system from the point of view of the individual is impossible. But the whole point of self-advocacy is that despite this impossibility it is up to us to do it anyway. And the one thing that no one tells you is: you can only be an active participant in your own healthcare, and more importantly, an advocate for yourself, if you have enormous reserves of self confidence.This is what Hospital Glam does for me. Historically I’ve had tremendously low self esteem. Yes, even for a dystopian android from the future this is possible! There’s nothing that depletes those already low reserves faster than when your body is ravaged by disease and you are forced to face a medical system that is wrought with even more prejudice than general society. Karolyn has done some interviews recently and says many of her own very eloquent things about why she does Hospital Glam. Do a Google search and I’m sure the many articles will pop up! For me, at least, since Karolyn gave us the name, my own ritual has had even more purpose. It’s now an essential part of my hospital visits, medical tests and other healthcare appointments. I now try to err on the side of deliberate thought, framing and act of self portraiture rather than the quick selfie. In doing so, I consider my entire surroundings and how I fit within them. In this act I find my sense of space and ownership and autonomy. I gain the confidence to force my doctors to see me as more of an equal; as an intelligent adult that deserves their respect and compassion, even if I cry during our appointment. And despite my protests, I am in fact a human being after all… my self portraiture serves as a reminder to myself, as well as the world I choose to share it with afterwards. -- source link

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