How NOT to treat disabled patients

Medical personnel providing a service.

JUST BECAUSE THEY ARE HEALTHY AND WE ARE NOT

When did things become BACKWARD???

When did THEIR time become more important than ours?

When did CLIENTS become patients?

When did their needs to be in control become more important than the clients’ rights to timely and adequate and compassionate service?

When did their convenience supersede ours?

When did taking care of disabled clients become a burden to them, an inconvenience to their mission?

When did their control become more important that our PAIN?

When did it become acceptable for them to frighten patients, to threaten them with dire consequences for not obeying instructions to the letter, to TELL them they will end up in the ER with a massive attack of something? (This has now happened twice.)

When did THEY end up with all the cards – and the self-righteous belief that they know best for OTHER people with REAL LIVES?

This is the letter I would LIKE to send to my medical services group – if I dare, once I have carefully weighed the consequences to my future treatment.

Think about that: I have to worry that they might be bothered by something I, the person responsible for paying them, might say. As nicely as I can.

First, though, I would like to say: don’t mess with a writer – they are good at nuance, both reading it and writing it. Not on the spot, of course – that’s for narcissists and sociopaths and politicians and comedians – but afterward, when they’ve had a chance to think.

And to realize what just happened.

And rewrite what you think just happened into the correct narrative that takes the CLIENT into account.

Except rewriting the narrative created by the thoughtless ‘professional’ requires 1) rereading it (I won’t – too negative), and 2) putting in an enormous amount of my own time – knowing it probably won’t work. Or change anything.

THE LETTER TO MEDICAL PERSONNEL AT XXXXX which I may never send.

Because I need some kind of medical care, and all of these are similar in that they think they know it all, and they OVERWHELM you.

My mind keeps nagging about the letter I should write to my medical providers about energy, visits to specialists, and fear-mongering. Which was applied to me, a disabled person, at the end of a too-long-for-a-disabled-person day.

And the tone of the after-visit summary took my breath away – and made no mention of or accommodation for that disability which caused so many of the problems.
Bullying a disabled person is NOT nice.

I will NOT have the procedure unless I decide it is necessary, there are several more worrying symptoms, and they don’t respond immediately to medication.
And do NOT appreciate how I was treated so cavalierly.

I need to write the letter so it appears in my medical record, and I can point to it, but I don’t expect it to have any effect on anyone there.

Do NOT treat disabled people the way you treat normal people – we can’t take it.

And no, it doesn’t NECESSARILY help to bring someone else along. Then I have to deal with THEM, too.

The calculus of what I can take vs. what I need is ongoing: don’t assume, ASK.

And more than asking, could you make a climate where I will think of asking myself, EVEN when exhausted?

Thank you.

CLIENT (person who pays the bills)

The above is not coherent – I’m still going to let it stand, because the incoherence is generated by the system.

I’ve let this one stew for almost a month, and I’m still angry. I was going to just let it drop, leave the unfinished post among the almost 100 draft posts I never finished.

Not naming names – and I’ve decided it isn’t SAFE for me to let them know what I really think, so I’ll keep tweaking the interactions (as in my previous state – which was as bad or worse) instead of taking them head on.

Other options to minimize the problems

One is to do as much as possible via video visits; those are usually on time, one-on-one because the provider isn’t popping in and out or pawning you off on a nurse.

Another – based on my last visit to another city for treatment – is to make sure you have done the paperwork part of a visit SEPARATELY via video BEFORE the in-person appointment. I find it a major problem to have filled all the paperwork before the visit, and to be grilled over every single thing in my medical history again anyway.

I will explain that it is very difficult for me to do BOTH in a single visit – and, by the time I get the service, I am exhausted and frazzled and not being as coherent as I tried to prepare to be.

LEAVE the minute it gets to where I can’t keep going. I keep trying to respect THEIR time, at the cost of trying to continue to talk and even be awake and coherent when things go on too long. Going back is not a great option, but maybe I can finish by video.

Stand up for myself in some small way each time.

Say, “This is not helpful.”

Risk being labeled difficult.

Complain to higher management – with specifics (respectfully – that writer nuance).

Suggestions?

Because the stress of doctor visits has gotten to the point that all I want to do is avoid them.

**********