Saturday, 2 March 2013

Here lies Edmund Blackadder, and he's bloody annoyed

(Courtesy of

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:


  1. 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

  2. That'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