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Jan. 19th, 2019 11:41 amSo, I may be losing my current home care nurse because she's considering moving out of state and I don't blame her. There's no opportunity here. The days when rural and suburban areas were considered good places to raise your kids are long over. Areas like the one I live in are so economically destitute and isolated, a majority of the people who live here commute at least two hours away to find work.And I'm never going to blame a single mother of two for wanting to move somewhere where she only needs to work one job as opposed to two or three. She deserves to see her kids grow up.
Where this leaves me, on the other hand is sitting through yet another parade of older white women who see home care as more of a hobby than a job, and who have so litttle understanding of chronic illness that they go back to the office and tell the head nurse on duty that "I don't look like I need home care."
Which speaks to a deeper bias in the medical and mental health community. How someone with chronic illness presents themselves on a day to day basis as nothing to do with what their medical or psychological needs are. Allow me to repeat that so it sinks in: how a person with chronic illness presents themselves on a day to day basis has nothing to do with what their medical or psychological needs are.
Just because I greet you pleasantly at the door does not mean that I am not in terrible pain. It just means I am in a good mood in spite of the pain. Just because I'm not bed-bound that day doesn't mean I won't be the next. Complex chronic pain disorders cannot be judged by one day of observing me. As an example, here are the main reasons I need home care:
I'm a fall risk. Even with the blood pressure meds I'm on I get dangerously dizzy several times a day.
My natural appetite is so low I can and will forget to eat for an entire day, which triggers an electrolyte imbalance, which can put me in the ER for fluids.
I will forget to take my meds. Even on a good day. They call it Fibro Fog for a reason.
I cannot drive, and driving is exceedingly painful for my father, so I don't like relying on him to take me places.
Those are just the main three reasons, and don't cover the crippling migraines that can last for days, the depression that makes it impossible to eat, contributing to my already abysmal appetite, and the need for face to face social interaction that I can't get otherwise because all my friends have very demanding jobs.
Home care is so much more than just assisting the elderly and infirm. Young people need it too and their needs present so much differently, and at least with the office that most of my aids hail from there is very little understanding of that.
Where this leaves me, on the other hand is sitting through yet another parade of older white women who see home care as more of a hobby than a job, and who have so litttle understanding of chronic illness that they go back to the office and tell the head nurse on duty that "I don't look like I need home care."
Which speaks to a deeper bias in the medical and mental health community. How someone with chronic illness presents themselves on a day to day basis as nothing to do with what their medical or psychological needs are. Allow me to repeat that so it sinks in: how a person with chronic illness presents themselves on a day to day basis has nothing to do with what their medical or psychological needs are.
Just because I greet you pleasantly at the door does not mean that I am not in terrible pain. It just means I am in a good mood in spite of the pain. Just because I'm not bed-bound that day doesn't mean I won't be the next. Complex chronic pain disorders cannot be judged by one day of observing me. As an example, here are the main reasons I need home care:
I'm a fall risk. Even with the blood pressure meds I'm on I get dangerously dizzy several times a day.
My natural appetite is so low I can and will forget to eat for an entire day, which triggers an electrolyte imbalance, which can put me in the ER for fluids.
I will forget to take my meds. Even on a good day. They call it Fibro Fog for a reason.
I cannot drive, and driving is exceedingly painful for my father, so I don't like relying on him to take me places.
Those are just the main three reasons, and don't cover the crippling migraines that can last for days, the depression that makes it impossible to eat, contributing to my already abysmal appetite, and the need for face to face social interaction that I can't get otherwise because all my friends have very demanding jobs.
Home care is so much more than just assisting the elderly and infirm. Young people need it too and their needs present so much differently, and at least with the office that most of my aids hail from there is very little understanding of that.
