“Please, Keep Us Updated On Your Health”

How about not?

Truly, this is probably one of the most annoying things which people say to me. Well, ok, I exaggerate, but people have been saying it a lot lately so it’s on my mind.

I’m a rather private person. I don’t think I’m that much more private than most, but as a general rule, I believe that my health is a personal matter. And that my body is my business, which is yet another example of how feminism and disability intersect, since women and people with disabilities have a long history of lacking bodily autonomy and getting serious pushback when they dare to try and assert it. My health, and my body, are between me, and the people who provide me with medical care. I may provide select people in my life with relevant information about my health when it becomes apparent that the information is necessary or important (for example, when I worked for other people, sometimes I needed to request accommodation in the workplace). But this is not an open invitation to these people to ask me questions about my health.

Yet, they seem to think that it is. And this is one of the biggest problems with owning your disability status when you have invisible disabilities. When you out yourself as a person with disabilities, people are apparently under the impression that this means that you want to talk about the specifics, that you welcome their suggestions and helpful hints, and that you would like nothing more than to discuss detailed and highly private health  matters in public. They assumed that you were like them and now that your dirty little trick has been revealed, they think it entitles them to information about The Other.

Truly. I have had people talking in very loud voices in public settings about intimate health matters. One might think that even if these people think that the desire for privacy does not apply to them, they might think about the fact that broadcasting information to complete strangers is probably not desirable. Especially in a small town, where information travels fast and often gets garbled, which means that I’ve heard a lot of varied, wrong, and highly entertaining variations on my disability status and health issues. (My favourite story: I had an aneurysm while on a dirty weekend at Tahoe with a cop. People, you cannot make this stuff up!)

Sometimes complete strangers apparently think it’s ok to act like they know all about me because they’ve heard something through the grape vine. Who feel that it’s appropriate to, say, walk up to me in the supermarket and say “I heard about…the diagnosis” or “how is your new medication working out for you,” or “you know, my sister’s son had [whatever they think I have], and he grew out of it!” And I must stand there, politely gritting my teeth while someone I don’t know is basically assaulting me in a public setting. And I can see everyone’s ears perking up as they freeze over the bananas and stop squeezing the oranges, because they want in on this juicy gossip.

The thing about invisible disabilities is that a lot of them carry stigma. I have no problem with being very open about my asthma, because, you know, it’s a no-fault disability, and it’s a pretty visible one at times. Some people just…get asthma. And it’s unfortunate that this happens, but no one makes a value judgment about you when they hear that you have asthma. Although they will tell you that someone they knew grew out of it. If I had a dollar every time someone said that to me…well, I wouldn’t be worried about my health care expenses, that’s for sure.

But, other conditions which I have? They carry stigma. One way to address stigma and to fight it is to come out, but that’s not an option for everyone. And I need to think about the fact that I live in a small town and I will probably live here for the rest of my life, and I would rather not be branded for life by the judgments of others. I need to think about the fact that people are routinely denied things like bank loans on the basis of disability status, and I need to think about whether or not I am ready for that to happen to me because the bank manager knows exactly who I am. I need to think about what will happen when I need to rent a new home and the landlord turns me away because of garbled information about my  health and personal history.

And I need to be able to assert my own autonomy.

Someone I don’t know very well recently asked me to “keep me updated on your health,” and I had the audacity to say “you know, that’s really a private matter,” and this person looked at me as though I had shat on ou mother’s grave while doing the tango.

Yes, I, the person with disabilities, chose to exercise autonomy over my body and private medical information by telling someone that my health status was not this person’s business. And I became the bad person. Just as women who inform people that their bodies are private are told that they’re being unreasonable.

Which brings me to my final point; I can’t help but notice that people somehow always manage to turn things back to them. They don’t care about my disability status or health; if they did, they’d already know about it. What they care about is information, the control of it, and the opportunity to exercise power over me. And this is, perhaps, what I find most infuriating about “please keep me updated about your health.” People get angry that my private information is not relevant to their lives, and thus, they make me into the enemy when I suggest that they should go take a long walk off a short pier and enjoy the swim.

About s.e. smith

s.e. smith is a recalcitrant, grumpy person with disabilities who enjoys riling people up, talking about language, tearing apart poor science reporting, and chasing cats around the house with squeaky mice in hand. Ou personal website can be found at this ain't livin'.

20 thoughts on ““Please, Keep Us Updated On Your Health”

  1. but no one makes a value judgment about you when they hear that you have asthma

    Unless you’re also fat, in which case that’s causing the asthma!

    Otherwise, yes, I hear everything you’re saying. I live in a town of 800 people and the gossip is rampant.

  2. Fantastic post. My mom and I left a small shop because two people (the shop worker and a friend) were talking very loudly about her health issues, complete with inaccurate information about what classes of meds she was taking. It was definitely an uncomfortable experience. Here we were out shopping, having fun, and it kind of ruined our fun space. Even if they would have lowered their voices, that would have been better.
    .-= Sasha_feather´s last blog ..Language =-.

  3. Oh, wow, I actually am fat…and have somehow evaded the fat=asthma trope! Astounding.

    I’m so happy that someone missed out on this one!

  4. Oh the advice thing… that is beyond belief. Oh you are fat? Have you tried *insert name of every ridiculous fad diet every invented*? My *insert name of friend, co-worker, relative, second cousin’s uncle’s mother’s dog’s first owner* did it and it worked for them!

    Pah!

    And the small town thing? I so hear you on that. While I don’t like the impersonal nature of the city, sometimes the claustrophobic nature of a country town can be just as depressing. Another challenge to the small town thing is when you work as an allied health professional (I am a counsellor and social worker by profession) and you need to avail youself of a counselling or social work service but you know you are going to have to go further afield than you own town (or even region) because you attend meetings with, work with, have professional associations with, every single social worker and/or counsellor within a 200km radius. And it isn’t that you don’t trust them not to keep to the Privacy Act, it is just that you don’t want to be running into someone ALL the time who knows all your personal business…
    .-= Bri´s last blog ..Quick hits =-.

  5. “often gets garbled, which means that I’ve heard a lot of varied, wrong, and highly entertaining variations on my disability status and health issues.”

    “branded for life by the judgments of others”

    What can one do if this has happened and they have lost jobs etc because of it especially when the information/gossip is inaccurate?

  6. Oh, Cee…I don’t know. I really don’t. One of the problems with small town life is that once something is out there, it’s there, and there’s no coming back from it. You can publish a notice in the paper and march down the street with a brass band and a megaphone and people will still think of you as “that person with that gross thing.” The only thing I could imagine doing is making sure the close friends have the right story, and hoping that the right story propagates. I am not a lawyer and not giving legal advice here at all, but there may be legal ramifications as well; you can’t fire people because they’re sick (or because you think they are).

  7. What can one do if this has happened and they have lost jobs etc because of it especially when the information/gossip is inaccurate?

    In my case the gossip was that I was trans (technically true though I wasn’t out then) and planning to transition at the job I had at the time (absolutely not true). I got fired ninety days after the meeting where the human resources director told me about the rumors about me. Ostensibly for poor communcation skills.

    The depression and paranoia and dissociation I was living with at the time got a whole lot worse. I could not stop thinking about blood and fire and death. I drank a lot. Shaved most of my body. Was hospitalized. Tried to get mental health professionals to listen to me about being trans and to get some help with that, to no avail. They gave me SSRIs and lithium and Risperdal and Ativan and tried to get me to talk about my childhood.

  8. I can definitely relate to this. Because I have a visible disability, people are used to asking me all kinds of questions about it, and I am used to just answering them even if it’s none of their business. I don’t accept it anymore if people stand ove rme when I’m at the computer, trying to figure out how my assistive tech works: they can ask and I’ll take time to explain, but please don’t try to hang over my shoulder when I’m sending a private E-mail.

    With regard to my invisible disability, I used to be more reserved than with questions regarding blindness, and I am trying to become more reserved again. After all, the details of my psychiatric institutionalization are none of a cab driver’s business even if he’s taking me there. Even if they assume incorrectly that I’m there because of my blindness, I don’t try to correct them anymore. I might destigmatize the blind just a little that way, but I’m stigmatizing people with my mental diagnosis in turn.
    .-= Astrid´s last blog ..Socialist Party May No Longer Keep Its Members’ Salaries =-.

  9. Yes, Astrid, something I didn’t touch upon in this is that for people with visible disabilities, there’s no “passing,” and people feel entitled to ask them questions about their disability, to touch or handle their assistive devices, etc. I am truly shocked at the incursions into privacy I see committed by people who apparently don’t regard people with visible disabilities as individuals who deserve bodily autonomy. I at least have the luxury of passing for something I’m not when I am in a place where people do not know me.

  10. This. Totally this.

    It is so infuriating when random people come up to me, assuming they know more about my disability than I do, and proceed to ask questions (more often than not, in a scolding, “I’m making sure you’re being a good patient” tone) or telling me what I’ve done / am doing wrong, and that’s why I’m disabled.

    Honestly, what motivates some people to do this, I have no idea.
    .-= mocha´s last blog ..Seriously =-.

  11. Meloukhia @10: I at least have the luxury of passing for something I’m not when I am in a place where people do not know me.

    Passing never feels luxurious to me. Instead, I’ll feel either
    nothing at all (when I forget that people can’t see my mental health or cognition impairments)
    sneaky or deceitful
    .-= Jesse the K´s last blog ..Quoted for Truth: Loving One’s Disabled Body =-.

  12. Yeah, “luxury” was not quite the word I should have used there, Jesse the K. I think what I was fumbling at was that, since I don’t have a visible disability, I can go about my daily business without being asked about it, which is not an option for someone with a visible disability. (And I also sometimes feel sneaky and deceitful, or frustrated, because I encounter problems because of disability which are not recognized by the people around me because they don’t read me as disabled.)

  13. You know, I’ve always assumed that this ‘keep us updated, won’t you?’ is intended as a social nicety unless it comes from someone who has a right to know (my doctor, my boss) and I answer on that basis with a bright ‘of course!’ but with no intention of doing anything of the kind.

    Miss Manners, does that make me a social slug?

  14. My in-laws, with the best of intentions, sometimes forget than my health is not a family issue to be spoken about to the general public. Occasionally, I’ll get cards in the mail from people at their church, whom I do not know, letting me know they have been praying for me in prayer group. I have no philosophical objections to prayer, so there is no issue there for me, but what the hell?! They seem to know some details, too. I certainly don’t expect my in-laws to absolutely, never mention their son and his family, so my health is bound to come up in conversations with people that I know as well, but a little discretion would be nice, ya know?

    And my in-laws always ask to be kept up to speed on my health. And ask pointed questions about “how I’m feeling.” I’ve taken to answering “like hell, per usual.” And immediately changing the subject. I may have to take a more direct route – they’re lovely, but clueless.

  15. Argh, I know what you mean. I get a variation on this from people who know about my depression.
    “How are you feeling?” or “How have you been feeling?” This is not to be mistaken with the social greeting “Hi, how are you?” – It’s nothing like that. They always say it in that quiet, sympathetic voice that implies “I know you’ve been wanting to hurt yourself, please tell me every detail so I can feel better”. It is so aggravating!
    .-= PharaohKatt´s last blog ..The Spoon Theory: How Does It Affect You? =-.

  16. Great post. I don’t have a disability, but I was born with a medical “issue” (to me, a total NON-issue that doesn’t affect my daily life in any way). But the people who know about it feel entitled to updates and descriptions of my medical history, and that pisses me off to no end.

  17. Just to add to the fat=asthma topic, when I was a kid the big thing to equate asthma with was anxiety. (see ending of “Goonies” where the kid gets brave and throws away his inhaler) When my son was diagnosed with asthma, they still thought it was because I “yelled at him too much.”

  18. Heh heh, I actually wish someone would ask me to keep them updated on my health (CFS), because my experience is that everyone forgets or doesn’t take it seriously enough to mention it. Even my parents. Never mind that I’m on a disability pension, so CFS is like, a pretty major thing in my life.

    I’m probably missing the point of the article, but I’m feeling pretty angry right now about invisibleness.

  19. Invisibility is definitely frustrating (and angry-making!). It seems there’s extremes on this: either you’re treated as a faker or people seem to think they’re entitled to know everything about your condition. Sometimes both at the same time!

    I just wish people would see me as a person first.

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