So how’s your ALS?

RT: “So how’s your ALS?”

Me: “ALS is always shitty.”

RT: “But how’s your progression? Is it slow? Did they say?”

*(RT stands for Respiratory Therapist)

I don’t know fully how to explain how I feel about this exchange with an RT in my home this morning, or how to fully explain all the things that are wrong with it. I am lucky to meet and have the caregiving of many exceptional and compassionate healthcare professionals. But the above is an example of a type that I encounter frequently and which I have grown to loathe.

In the beginning it was easy to be forgiving, to overlook unintentional insensitivity, well intended but misguided advice, kind ignorance, and plain human curiosity.

The curiosity bothers me more and more over time, as I begin to see healthcare providers as using their professional position to satisfy their personal curiosity. I am frequently asked, in that authoritative doctor or nurse (or even dentist) voice, how my ALS symptoms started. This is in a context in which is it totally irrelevant and has no bearing on what the provider is seeing me for. I have been at the ER for a migraine, or the dentist for a cleaning, or at one of my children’s healthcare appointments, and I am asked this, again and again. It is not part of their job in that moment, it is just curiosity. I feel there is a subtle abuse of power there, though the individual is often sympathetic and well intentioned. But have any of them ever thought far enough to realize maybe they are causing me pain to satisfy their morbid curiosity? That maybe it’s hard for me to tell my story again and again?

This morning an RT I’ve met only one other time in my life, asked me casually “how my ALS is doing,” and prodded about my disease progression. As if asking how quickly my death approaches is on par with discussing the chance of rain. This is a person whose only job is to periodically check that my non-invasive ventilator is working and that I have enough supplies.

This same RT tends to speak to me in that voice specially reserved for four-year-olds and, apparently, the very infirm.

The nurse who flushes my port once a month did not know ALS was degenerative and ultimately terminal. After several awkward conversations where she was describing “when you’re better…” and “hope you’ve got some strength back next month!” whilst I tried to respond vaguely, I finally had to explain to her that I cannot recover the strength I’ve lost and I will, unfortunately, not get better. This inevitably led to me comforting her, so when my husband or I encounter this with a professional we won’t see regularly we don’t bother explaining. This happens a lot, despite that these are people involved in my care. But they aren’t ALS people. They serve individuals with all different diagnoses, so I don’t blame them for not knowing all about mine. That doesn’t mean I have endless patience though.

Some providers insist on trying to have a friendship with me. Sometimes I just want them to come, do what they need to do, and leave. Keep it professional. I don’t want to be everyone’s friend. Some nurses I “click” with and we do develop a natural friendship, but I have others that I don’t feel that with, and yet they push me hard for personal chat and I find it really invasive. To be fair, I’m that person who hates going to the hairdresser because they do the same thing, so maybe I’m just too antisocial. But when I put out those “I don’t want to talk” vibes and they push on anyway, I feel like they’re again taking advantage of that bit of power they have where I’m the patient and I’m supposed to answer their questions and do as I’m told. I get angry and resentful.

Sometimes I really think ALS just brings out my inner bitch in a big way. I find myself angry at everyone. Feeling powerless makes you want to lash out. But I think I have some legitimate gripes about some of the care providers I interact with. I wish they understood what’s it’s like to be on the patient end of the relationship.

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