For the entire quarter of a century I’ve been ill people who know nothing about me or my diseases have been trying to fix me. I know they mean well, I truly do, but why anyone with no medical qualifications thinks they know more about my health than I do baffles me and how they think they have the right to offer me unsolicited advice baffles me even more. Would I tell a total stranger online, or some family member I never see from one year to the next, how to manage their finances, parent their kids or improve their marriage when I know nothing about what’s really going on, the issues are deeply personal and they didn’t ask for my advice in the first place? No. Yet everyone and his dog thinks they can tell me how to manage my health. It irritates the life out of me. Scrap that, I feel livid just thinking about the decades of well-meaning, but ultimately intrusive and insulting, comments I’ve had to endure.
The conversations with people I actually know usually start something like this:
“Hi Jak, how are you today?”
“Oh, fair to middling” (which is a Cumbrian term for ‘crap’ – I refuse to say fine when I am clearly not, and never will be, fine).
“Oh, that’s a shame. What’s up?”
I am not going to list the dozen symptoms that are currently troubling me the most, or go into detail about my bowel habits, menopause or the fact I have itchy hives on my arse which are personal and no-one’s fucking business but mine, so I usually reply “Just having a pain flare.”
“Have you not tried some painkillers?”
Oh my God why I haven’t I thought of that! Said no chronic pain sufferer ever. Seriously, I have no clue what I’m supposed to say to that. I’ve tried various responses, which all lead further down the path of well-meaning, but ultimately insulting, advice and only serve to wind me up like a clock. For example:
“Really?! Surely there’s something you can take?”
“Well what about things like Gabapentin/Amitriptyline/insert-any-non-analgestic-drug-of-your-choice-here? My friend with ME is on that and it’s really helpful.”
It’s at this stage in the intrusive conversation when I’m hormonal, have barely slept for 10 days and am so fed up I could cry that I want to punch them really hard on the nose.
Or I get the whole “have you thought about acupuncture/a gluten free diet/prayer/insert-the-thing-which-cured-you-or-your-friend-here?” and then have to justify why I have, or haven’t. Like it’s anyone’s fucking business. Do I ask you if you’ve tried debt counselling or been on Mum’s Net for advice on controlling your unruly teenager? No I do not, because your private life is none of my Goddamn business and you are a grown adult capable of running your own life.
Then, at the end of the conversation when I’ve had to evade all their well-meaning but unasked for advice the other person gets a bit narky with me, like I’m deliberately letting myself suffer when there is clearly help out there if only I’d try it. When they’ve had over two dozen potentially life threatening anaphylactic reactions to everything from herbal tea to B12 supplements and have PTSD at the mere thought of trying a new fruit let alone a powerful drug like Gabapentin, then they can tell me what I should and shouldn’t be trying. Until then, they need to shut the hell up.
If I want someone’s advice, I will ask for it. Until then, I am allowed to say I’m not well without you trying to fix me.
The best response is the one my lovely friend John at Camera Club uses and it’s this:
“Hi Jak, how are you today?”
“Oh, fair to middling”
“I’m sorry to hear that. I hope you’re back to your normal again soon. Let me know if there’s anything I can do to help” (and he actually means that, unlike most people who say it and pray you never ask for help).
“Thanks, me too.” And I walk away from the conversation knowing he both cares and gets my situation. Note he doesn’t say I hope you feel better soon, because that’s the worst thing you can say to someone who is chronically ill with no hope of ever being well.
I’m fed up of people trying to fix me. I don’t care that it’s well-meaning. It’s intrusive and patronizing. If I ever want someone’s advice on my health I will ask for it, but it’s unlikely I will be asking some stranger off the internet or some random family member. Call me weird, but it’s much more likely I will be asking a medically qualified Consultant who specializes in at least one of my rare and complex diseases!