I don’t have any answers today, just a question: what’s your preferred label (in the medical setting)?
I like “XLHer” for those of us who have that specific condition. It’s descriptive and doesn’t have any annoying connotations. It’s also a bit of an insider label, in that anyone who uses it is likely to be actively engaged in the XLH community (unlike those who call it a “form of rickets”). It doesn’t work so well for the other hypophospatemias though: TIO-er? ENPP1-er? They don’t exactly roll off the tongue, do they? Maybe ADH-er works, but that’s a little too close to ADHD, so it could be confusing.
Moving beyond the label specific to XLH, I’ve seen conversations in the patient advocacy setting in general, about whether it’s more respectful to call us “[name of condition] patients” or “persons/Individuals with [name of condition].”
Personally, I’m fine with being called an XLH patient. Or person/individual with XLH. The latter seems a bit stuffy to me, but it doesn’t actively annoy me,although I’d probably go with “person” rather than “individual.” I’ve heard that some people don’t like to be called a [name of condition] patient, because it suggests that their medical condition is their full definition, rather than being a person first, who just happens to have the medical condition. I can see the point, but maybe I’m just so used to it that I don’t have strong feelings either way.
On the other hand — and again, this is just me, not a judgment of anyone who likes the term — I really don’t like the “warrior” label. I don’t consider myself a warrior, just someone who deals with a medical condition, as necessary. I’m not entirely sure why I dislike the “warrior” term so much, other than perhaps because it sounds like I made a choice to fight something. Those of us with genetic disorders don’t really have a choice beyond moving forward versus giving up. But it’s not like I actively chose to do battle with my DNA or something. I just keep putting one (toed-in) foot in front of the other, moving forward, rather than giving in to my limitations.
Part of my dislike for the term also comes from the implication I’m somehow praise-worthy for being a warrior. It’s the emotional difference between “soldier” and “warrior.” The former suggests duty and training and not much more. You can be a good soldier or a bad soldier, an effective or ineffective one, a new or seasoned one. It’s largely an objective label, rather than one that carries judgment with it. Warrior suggests something closer to hero, in my mind at least. And again, I’m not a hero, just someone who copes with the DNA I was given, so I haven’t done anything to be considered a hero.
Something else I’ve noticed about the “warrior” label, and I could be wrong about this, so your experience may be different, but it’s usually not the person with the medical condition calling herself a warrior, but someone who does not have the condition. So, it’s a parent or grandparent or friend or researcher. And to that extent it feels a bit condescending. I’m sure it’s not meant to be, but it feels that way when I hear it. (I should note that I think a lot of the parents of XLH kids are warriors, given what they need to go through to get their kids a diagnosis and good treatment, but when I was a kid myself — so many years ago! — I did not feel a warrior, just a kid who was different and coped with those differences.)
The bottom line is that I’m always uncomfortable with praise for something I don’t think I’ve earned. If you want to praise my writing, that will always make me happy and I will joyfully bounce around with a grin on my face for hours afterward, because I work hard at telling stories, both fictional and real-life. But praising me for just surviving a chronic illness? That feels artificial to me, so it makes me uncomfortable, like I’m being rewarded for something I didn’t earn.
Which brings me to “survivor.” It’s most often used for those with conditions that are terminal, especially cancer, when it goes into remission. Since XLH isn’t terminal, and there’s no inherent reason why I wouldn’t survive it (there can be terminal complications, but they’re extremely rare and usually due to some intervening fluke event), so it just doesn’t seem to apply to my experience.
So, what about you? I’d love to hear how you prefer to be labeled, and which labels irritate you.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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