I have just returned from a scary and unscheduled fortnight in hospital. I want to tell you about what this experience has crystallised for me, from social and medical perspectives, although I have been thinking about a lot of these issues for a long time. I am going to post several times over the next little while. Some of this material I wrote while in hospital, and some I am going to be writing subsequently.
I am always referring people to the concept of kvetching circles. In a crisis, you put no social obligations on the person at the centre. You are only allowed to place demands on people further out from you. It’s a great idea.
How I wish I had introduced it to everyone I knew before this.
I avoided telling lots of people I know that I had been taken to Emergency, because I knew there would be a focus on how it would affect them (even though I am the sick person), or else because I knew it would be too much for some people already going through a rough time, or else because I’ve had limited energy to tell people who didn’t need to know right away.
But also? I was in lots of pain. Pain that hardcore opiates did not touch. I was tired and frightened and hungry. And I did not want to deal with the world of shit that would come of telling people what was happening.
Of course, the shit came for me anyway, because not following social obligations is against my polite ingrained lady mindset or something. I kind of wish I had from the start followed my gut feeling to not tell anyone except work and so forth, rather than starting to follow that feeling once it was too late. Once it got to too late, I felt so awful telling people I wasn’t up to phone calls or visitors because it felt so rude. I know. The social conditioning of women to be nice is incredibly harmful. I could perhaps have handled a few more phone calls and visitors at my energy levels if I knew I could rely on people to not display the below upsetting behaviours, but I wasn’t born yesterday.
I got asked if I would receive visitors after explicitly and politely saying I would not see visitors (barring some support folk). I think this is just people trying to offer whatever support they can, but, if a patient has said no, this is disrespectful. It is not kind. To visit is placing a burden on the patient to reassure you, or entertain you, or put on a public face, or feel pressured to share medical details with you, at a time when shit’s going down for them. You might think you are being good friend if you make this request or even barge in (!). You are not an extra special friend. You are backing your sick friend into a social corner and it is not on. You are forcing yourself on a private and painful experience that the patient cannot control.
I have been asked for medical details, repeatedly. You know what I have? I have a great big case of None of Your Fucking Business. One person’s curiousity does not trump another’s medical privacy. Do I really need to state this? People will tell you what they want you to know. Is that not obvious? Think about your motives when asking these kinds of questions and whether any useful purpose is served for the actual sick person. I wish people might have thought about whether I have anything I might consider frightening, embarrassing, or personally devastating. How about other people you may have put this question to? Maybe the person you’re asking has weeks to live. Maybe their main hope in life was to reproduce conventionally and they had their testicles or ovaries removed. Do you really want to be the scumbag who raised that morsel to tuck into your little knowledge bank?
The next time I hear someone respond ‘What kind?’ upon hearing someone has cancer, or ‘What of?’ upon hearing that someone has died, I am absolutely going to lose my shit at them. It is going to be incandescent.
When I first went to hospital, I received many unsolicited suggestions about possible causes and diagnoses. This made me really upset because, again, a) unsolicited, b) I came here to see medical professionals, c) I have been lying in bed thinking about all the possibilities and am, you know, quite invested. This is harmful, not helpful. Do not do it, especially if you are one of those people who likes to tell cancer patients and such that they need to drink more juice or whatever. If you think you have real information, not a stream of speculation, ask first if you can raise it and be concise. This stuff is exhausting and you are probably wrong.
In short, do not centre yourself and do mind your own business if you are not the one in the hospital bed. If you are, I hope you can draw some confidence from my post to definitely centre yourself and your decisions about your medical information. It is hard to be a strong self-advocate at the best of times, and being hospitalised is not the best of times. I am going to be burning some serious bridges if ever again I have to deal with this shit while in sheets festooned with bits of my own insides. You’re welcome for that image.