(Courtesy of SMBC-Comics.com)
I’m sure anyone who frequents the realms of the internet
will have encountered the above illustrated “Mount Stupid”. The silly little
hill where those who know very little about the topic at hand sit and attempt
to drown out everyone else with their non-knowledge.
I will admit, this is where all thoughts of serenity and
calm go out of the window for me. I don’t like people who play the know-it-all
in any walk of life, because I see a distinct difference between being
knowledgeable and using it in a helpful manner (generally when asked), and
being knowledgeable (or not) and using it to try to look better than other
people.
My body is not a plaything for your game of superiority.
If the collective brains of medical science don’t know all
that much (comparitively speaking) about Fibromyalgia, how ludicrous is it for
someone to skim read a Wikipedia article, do a quick Google search or indeed
just parrot whatever they’ve heard second hand to think they will know better?
In short, how dare you assume you know more than me about my
own illness?
There are of course differing degrees of this ignorance. I’m
sure I’m not the only one to be accused of making it all up, of lying. I can’t
even begin to comprehend this – why on earth would anyone *want* to be unwell?
The usual answer offered is to gain the sympathy and attention of others, but
speaking as a sufferer of chronic illness sympathy is the last thing I want.
Understanding yes, pity and sympathy no. Sympathy just highlights the problem –
I know it’s there, I’d rather not draw any further attention to the fact my
life is different from before.
When I fell ill I was at first misdiagnosed with Irritable
Bowel Syndrome. Knowing little about it and not being entirely trustful of the
results of your average Google search, I asked for advice from others on a
public forum where I had seen the condition mentioned previously. A user asked
what it was (I’d typed “IBS” rather than the full name) and immediately several
people waded in with their opinions – and yes, most of them were indeed
residents of Mount Stupid. Whilst saying “it’s just a bit of diarrhea or
constipation” isn’t strictly a lie, it barely skims the surface of what is
actually a much more complex problem than “just” that. Others jumped straight
in with “it’s not serious” – and while it doesn’t do any actual damage to the
body in the way that for example an inflammatory bowel disease would, it can
have a profound effect on quality of life.
Lesson learned – don’t ask for wider opinions in so open a
fashion, you’ll invite more ignorance than you will helpful advice.
An example probably more widely seen by most is the subject
of depression. Everyone has an opinion on the “myth” of what antidepressants do
or don’t do. Every Tom, Dick and Harry (who are usually notable only for the
fact they are not and have never been sufferers of depression) suddenly know
exactly what actual sufferers should and shouldn’t do. In short, all the
residents of Mount Stupid are suddenly mental health specialists.
Fibromyalgia has its own specific set of misconceptions, as
do all poorly understood conditions. Some of my favourites are below.
“Doctors say it’s not even a real condition, just a bunch of
symptoms.”
Gee, thank you. Whilst this is indeed one theory (research
continues), for the moment there is a recognised condition with the name
Fibromyalgia with a legitimate set of diagnostic criteria which have to be met.
How do I know? Why, because I was put through the tests for the criteria by a
doctor who then used the results to diagnose me. And no, I don’t want to have
the pressure point test ever again. It hurt.
“You can’t be in pain *all* the time, that’s ridiculous”
Can’t I? Please resend the memo confirming this prohibition, my body clearly
missed it. I do understand that permanent fluctuating levels of pain are a
difficult concept to comprehend for someone who has only experienced the
transient finite pain we’re all accustomed to, but I can assure anyone reading
this that it is indeed a very real phenomenon.
“You don’t look sick.”
My all time favourite. There are many
memes around on the internet offering various answers to this question, ranging
from the brilliantly sassy to the downright rude, but my personal preference
(purely for humour value) is below
Now, I’m not suggesting it’s a lie. On a simplistic level it’s
perfectly true – we generally don’t look sick. However, do these people ever
stop and think about why many of these things are called “invisible” illnesses?
Shockingly, it’s not just a clever name.
In summary, I might have days where I hate what my body is
doing right down to the depths of my soul, but it’s still my illness and my
body. It’s not yours. It’s not happening to you, and without actual experience
of the same thing it is very difficult to truly understand the problem.
What most chronically ill folks who have their heads screwed
on the right way would want is that you at least make the attempt to understand
– and you accept what we have to say.
If all you do is spout the little you think you know, then
you prove your own ignorance and more disturbingly you prove your foremost
desire is to turn the situation or conversation into being centred on you. You
prove your own lack of compassion.
Our doctors often don’t know the things we need them to – so
you, a random bypasser in our story, certainly don’t.
And to finish, a humorous tip. Whether it’s a chronic
illness, a topic of news, or a banal discussion of the weather, the following is never going to be a clever answer:
I love reading your blogs. I've got fibromyalgia and arthritis, and can relate to what u write so well. I read one of ur blogs most mornings as it helps me stay positive during the day. Thank you xxd
ReplyDeleteThat's a really great thing to hear, thank you very much! I shall do my best to keep it up :) wishing you lots of spoons! xx
ReplyDelete