I haven't had a chance to make my blog look pretty like so many others I have seen, but honestly since it's mostly about my ramblings, I guess that isn't as important. I've never been one who has found writing particularly therapeutic, but this seems to be different. Maybe it's because what I'm writing about is so personal. Which is odd because I'm a fairly private person, and yet here I am, sharing very personal and private thoughts with the world, or at the least the few people in the online world that may wander onto my page.
It has been a difficult week or so for me. Medically, personally, professionally. I've been treated in ways that no one deserves to be treated by medical professionals, by the very people that we go to to feel better, that we trust to listen and believe us, thinking that they are in the medical profession because they care about people and want to make them better. Unfortunately, if you are a person with a chronic health condition, you learn quickly what the medical system is really like, at least for those of us that don't look sick or whose symptoms don't fit in a box and can't be diagnosed by a simple blood test and fixed with a couple of pills. The lack of knowledge about zebra conditions leads us zebras to learn everything we can about our condition(s), possible treatments, finding the few specialists who actually treat us, what doesn't work, and even want to try things that seem crazy or unconventional. Most doctors assume that we spent an hour or so on Google and are hypochondriacs or attention seeking, when in reality, we know WAY more about our conditions than they do. The few good ones admit that and encourage the research and online forums and support groups; those are few and far between. I've been lucky enough to have had one of these doctors during graduate school, but she has retired and moved on to new adventures (but still checks on me via Facebook). Another problem people with chronic health conditions face is that we need to find not just one doctor, but a team of doctors to treat the many symptoms and issues we face.
One of the first questions I ask a new doctor is, "I have Ehlers Danlos Syndrome - do you know that is?" The cocky ones get offended and say of course they do (which usually means they don't). The honest ones say no or just a little about it. The great ones, regardless of whether they say yes or no, voluntarily do research on their own to learn more about it and take any research or information the patient provides. One of my favorite doctors ever, my physiatrist who has unfortunately moved away, actually read my chart and all the paperwork I had filled out, plus the notes my doctor put in the referral, asked me a few questions, put down the clipboard and looked at me and said, "This sucks!" I burst out laughing and said, "Yes, it does." One doctor asked me if having EDS meant I could do circus tricks and others have asked me to show the visiting doctor, med student, army ranger medic, whoever, to show them what I can do and how I can bend. The most recent PA I encountered, answered yes when I asked about EDS, but then proceeded to tell me that EDS doesn't cause pain and why I was under the impression that it did? I tried not to let my jaw drop and explained that my joints are constantly unstable, pop in and out of place all the time, and all my joints experience multiple micro tears every time that happens. Not to mention the muscle spasms, hardware in my head and neck, barometric pressure and weather changes and many other things that contribute to pain. I wish someone would invent a technology that allowed doctors and other medical professionals to experience a simulation of what it is like to be in a patient's body, experience what we experience, and then they may be less quick to write us off or dismiss us. I would love it if every medical professional that treated me with contempt, disgust, disrespect, boredom, and/or was rude could experience what spending 5 minutes in my body is like. Then they may have an entirely different perspective.
So, who wants to step into my shoes for a little while or the shoes of any other person with a chronic condition who "doesn't look sick" and especially if you are young? Try a little social experiment. Borrow a handicapped parking pass from someone, go to the store, and use the pass to park in a handicapped parking space, and then walk into the store. See how many people look at you, glare at you or even yell at you. Use the elevator when people are around and see how many looks you get. Put a wrist brace on or your arm in a sling, go somewhere public like a store, and see how many looks you get, how many random strangers come up to you and ask what happened, invade your privacy and ask very personal questions, offer advice about something that worked for their brother's best friend's aunt's neighbor. Borrow some crutches and go to a place that has no "push button" doors to open on their own and try to open the doors, while staying upright on your crutches and see if anyone stops to help. Use those same crutches to walk a decent distance or go up or down some stairs and see how long your arms and hands last. Use the grocery store wheelchair and try to open a door in the freezer section or reach something out of your reach and see if anyone offers to help. Or any other ideas that may come to you.
Try it and let me know what happens! And what you learned :)
"Step into my shoes and walk the life I'm living and if you get as far as I am, just maybe you will see how strong I really am." Author Unknown
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