Unhelpful Helpfulness - when strangers offer advice, it's often anything other than helpful.

Annoying helpful person #108: “Oh my God my Great Aunt Beatrice had migraines too and she swore by putting spinach leaves up her - ”

Me: “- Gosh that sounds fascinating but I have a leaky bladder so I really have to run to the little ladies room. Right now. Sorry.”

Annoying helpful person #238: “My Mother-in-law swears this Guru Therapist cured her migraines, here is his card.  He’s expensive but you MUST call him and -”

Me: “- I’ve just been declared bankrupt so you’d have to give that card to my lawyers. But thank you.”

Annoying helpful person #3498089: “Ah, interesting you say migraines. My friend’s cousin’s, brother, stepsister, father by their first marriage had a daughter-in-law who suffered horrifically and they found that eating sugar lumps solved everything. Have you tried- ”

Me: “Oh my God I’ve got diabetes how could you be so insensitive?! ** And yes I have tried whatever you’re going to suggest next, please see the ‘tried and tested’ section on my witty and informative migraine blog for more information! Good day.”  

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Just to clarify, I am not a bankrupt, diabetic with a leaky bladder.** Apologies to anyone who is, no offence meant. It must be a horrific way to live (cough – Martine McCutcheon – cough) Kidding. I love her, actually.

But recently I find myself reluctant to ‘out’ myself as a migraineur – even though the whole purpose of this blog is to do just that. I believe, whole-heartedly, that we need to engage, educate and talk more openly about migraines; make it less taboo. Yet, yet – there are quite a few downsides. One of these is what I call Unhelpful Helpfulness.

Now I am extremely guilty of this too. When I meet a fellow migraineur in the flesh, I find it incredibly frustrating when they don’t want to engage with me as I feel sure I can help them in a number of ways (arrogant, moi?). I don’t mean I’ve any delusions of being a Doctor (I do slightly wish I was House) but I’ve probably read more about migraines than the average GP, and I feel I can point people in the right direction in terms of getting access to the right help and support. So before I begin my rant, proper, I put my hands up and fully acknowledge that I’m seriously annoying in this area too – I am an Unhelpful Helper. But – I’m pretty sure I can help you as my advice is amazing!!! Sigh.  

Anyway. The most annoying Unhelpful Helpfulness (I’m not quite sure if this is a noun or a verb, stay with me) comes not from those who mean well, whose heart is in the right place - those people I can forgive and bear to listen to and nod along politely with -  but to people you’ve JUST met. I mean, you’ve know them for FIVE seconds and already they’re saying “You must try this! Why haven’t you tried this? Now do this!”. It’s exhausting. These people who’ve know you, and apparently diagnosed your entire complex medical condition in FIVE seconds (they really should all give up their current professions and become diagnosticians) make me feel guilty, lazy and defensive. And quite frankly, I work hard enough fighting migraines, I don’t need to waste my time explaining my life history and medical choices to these chumps.

The problem is, I have tried most things. Side note: I don’t ever say I’ve tried everything. And I’m always suspicious of migraineurs who say “I’m running out of options” or , “I’ve tried everything”, as that’s virtually impossible. We must never give up hope. There are over 100 variants and combinations of preventatives and assortment of treatments to try – so have you really tried them all? Usually this means you need to find a new Doctor. Um, I’m being an Unhelpful Helper again.

But one of the worst types of Unhelpful Helpfulness is when people get disappointed or angry when you a) have actually tried their random suggestion of eating butterfly wings and b) it didn’t magically CURE you. These people want to fix you. They don’t understand why you’re not FIXED. In short, they don’t understand – and can not comprehend - chronic pain conditions. Young people, and those who have never had any kind of serious health complaint themselves, are often these type of Unhelpful Helpers – offering tips such as “Go for a jog”  or “Drink Green Tea!”.

However, I once met this seriously annoying girl, who actually had migraines herself. I was really beginning to struggle and she just looked at me as if I was this pathetic Rabbit she’d skin alive and said, “I just learnt to control mine with my mind. I had to go on stage and sing with a migraine, I didn’t make a fuss” (the implication being I clearly was) “And I just suppressed it and got on with the job! Now have you tried Devil’s Claw?”

“Yes, I have tried Devil’s Claw, actually.”

“Well try it again. Learn to control the pain with your mind.”

“You are clearly just a stronger, better, more amazing person than I will ever be. Bye.”

I couldn’t believe that a fellow migraine sufferer was being so unsympathetic. And I know that for some, Devil's Claw and mindfulness/meditation can do wonders. But for me it didn't. Usually, I’m always fascinated to listen to the stories of other migraineurs, what treatments they’ve tried and tested, what side effects they experienced from which medications, what tricks they use when they’re feeling nauseous etc etc etc. We can, I believe, learn so much from each other. I always say that ‘migraines are bespoke’ (that phase is copyrighted to me, people), i.e how we react and experience migraines is incredibly varied person to person. But there is a lot of common ground and a lot we can learn from one another. We may even pick up a new coping mechanism that will have a profound effect on how we manage the condition.

So, the moral is: Unhelpful Helpfulness doesn’t (usually) come from fellow sufferers of chronic conditions, who understand that there are no quick, magical fixes. But it can come from well meaning members of the public who bombard us with anecdotes and ‘helpful’ advice! I know I sound mean, and I do feel slightly torn as sometimes, just sometimes, it can be worth listening to those random people you bump into at the office Christmas party. You never know, maybe their Great Aunt Beatrice might have had a very clever trick that actually works for you? Friends of my Mum frequently send her migraine articles cutout from newspapers (they’re still getting the hang of email), in the hopes that it might be of interest to me. I find this rather touching. 9 times out of 10, I’ll have already seen it but I do appreciate the thought, and you never know, I might have missed it. A couple of years ago, such an article did spur on Mum to drag me to a new Doctor who, apparently, had helped Bella Freud with her migraines! It didn’t amount to much in the end but I learnt a few things. The actions of my mum’s friends, by the way, comes under the heading of ‘thoughtfulness’, rather than Unhelpful Helpfulness.

I guess what I’m trying to say, is that on the whole it’s just exhausting trying to explain your complex medical history, often to a stranger, often in the line to the loo, and trying to make them feel better when they demand to know why you won’t be taking the card of their mother-in-law’s dentist. (FYI, I have tried that route.) And why, after 13 years, you’re still not better. Maybe I should just smile, count to ten in my head, and take the “incredibly useful” advice of the next Unhelpful Helper I meet.

  

** I know NOTHING about sugar and diabetes. But here is an incredible useful website if you want more information about this topic from people who actually know what they're talking about....

http://www.diabetes.org.uk/Guide-to-diabetes/Food_and_recipes/Sugar-and-sweeteners/