Living with chronic pain is painful… der… but I don’t mean just the pain-pain, I mean all the other stuff that goes with it.
One of those “things” is the way that other people respond to your situation; the way they do (or don’t) accommodate our special needs, and the (accidentally) hurtful things they say…
In the past I have threatened my husband with divorce if he asked me one more time “how’s the head?” Whilst he might have been genuine in his inquiry, the wording felt too casual, too flippant for the chronic pain mess that I was in at the time.
Unfortunately, I’m one of those people who fumbles and stumbles intellectually when confronted with someone who tries to intervene in my migraine moments.
One of the weirdest times was when another parent offered to drive me and my young daughters home. I wasn’t feeling great (and apparently looked worse) but had managed to muster up the effort to drive safely to do the school pickup. She wouldn’t take no for an answer though, so before I could wrangle a refusal, she dropped us all back at my house. Nice. She meant well. Problem was… my car was parked in a 2-hour zone near the school, so I had to walk us all back to school to pick up the car to avoid a parking fine.
Later that night, a ready-to-bake meal was dropped off on the doorstop by the same well-intended lady. This time it was my husband who was a little bit miffed; did she assume he didn’t know how to cook?!
And all that flustered-mess was with someone who meant well.
When I meet someone who is dismissive or passive-aggressive or even downright rude about my chronic migraines, I’m even more hopeless (or helpless). I stand there frozen in shock and disbelief, disappointment or even simmering rage and tend to say nothing. Later, (always later) I come up with a dozen ways I could have “schooled” them and bought them into line.
Recently, I came across an article that included ways that you could respond when someone is rude or mocks a loved one’s disability (which can be refashioned for you to use for your invisible migraine-disability):
11 Ways to Respond When Someone Insults a Loved One’s Disability | TIME
Some proposed replies were straight forward, such as; “that’s hurtful“.
Others turned the tables, as it were, and asked “what do you know about xyz?” or “why would that be funny?” Questions that made the speaker think, in other words.
There were a couple that point out that times have changed, and words that we used to use are no longer acceptable (I can hear the anti-woke team mumbling and grumbling – but I’m sorry-not-sorry, I believe that we should all be very careful with our choice of words: words have power and they are just as harmful as sticks and stones when intentionally lobbed at others.)
There was one suggestion, early in the list that felt a little too aggressive (to me): “I’m going to assume that came from a place of ignorance.“
I get it, but never in a million years could I imagine being able to say that to someone. Even if they were insulting my husband or children, parents or best friend, I just can’t imagine being brave enough to say the equivalent of “are you an enormous fool or what?!”
Perhaps the one that I most wish I could say, but probably wouldn’t, is: “Yikes! Is that really who you are?” But even that feels as if you’re being judgmental of someone who you are trying to encourage to be less judgmental.
Bottom line – it’s not easy.
Whenever we are faced with negativity, it is difficult to be the bigger person and take the higher road… and yet – if we do just let hurtful words slip by, then the bad behaviors continue… the rudeness might never stop.
I’m sad that “social” media seems to be becoming more and more anti-social, and that people are routinely vilified and belittled… especially when the “jokes” are at the expense of people who are struggling.
My Twitter-X feed (here) is currently filled with people who are anti-inclusion (not to me (I don’t get enough exposure!)). Being anti-inclusion is their right. I guess. But it feels like a cold hard world we are leaving our children if it’s all about survival of the fittest and everyone for themselves… where does that leave the vulnerable?
All that said – when it comes to “rude” comments about my medical condition, I think that more often than not it really does come from ignorance. It’s impossible to understand what life with chronic migraine is like if you haven’t even experienced a single migraine.
Similarly, I can only imagine what it is like to live with fibromyalgia, POTS, arthritis, whiplash or any other perpetual pain conditions… imagine yes, but fully understand, no.
That’s why it’s always possible that I will put my foot in my mouth and say something (accidentally) hurtful – and I put the “accidental” in brackets because even if it is accidental it still hurts, AND because you can never be really sure what is accidental and what is not – sometimes even the speaker can never be 100% sure where their words are coming from… I know that I have (accidentally) been mean due to my own phobias and insecurities… or simply lazy with my word choice due to fatigue.
Long story short – be nice to people – and do your best to accommodate others who are not so nice (assuming they are coming from a place of low understanding (not just being nasty-know-it-alls!)).
Equally important – keep telling your people your story – the more awareness there is, the less ignorance becomes likely. The more we know, the more we grow – and that goes for everyone else around us as well!
Take care taking care, Linda xx
The Mindful Migraine 
Leave a comment