Much as I hate to admit it, I’ve been feeling a little s******d of late (yes, the word makes me very uncomfortable). Having a prolonged and confusing flare-up of my Endometriosis has led to me slipping into a strange and disconcerting existence where the Fibromyalgia doesn’t have to fight so hard to retain dominance. The additional issue that my GP appears to believe that Fibromyalgia doesn’t need to be treated at all has left me having to figure out my own regimen without access to any kind of safety net or physical support network.
The illnesses I was able to juke around for a while have once again formed a wall in front of me: I’m using every strategy that I have ever known to prevent my body from collapsing under me (hockey season is just beginning, so I know that will help to steady the ship…) but everything that was once considered tried, tested and true is falling to keep my symptoms at a manageable level. Right now, it feels as though the weight of trying to perform nonstop ‘repairs’ and damage control is going to crush the life right out of me. I can clearly see that, for the moment, I am really struggling to cope, but I also know that the consequences of asking for official assistance could be both huge and seriously detrimental.
In the medical catchment area where I live, Fibromyalgia is definitely still treated as a purely psychological phenomenon. None of the neurological aspects are even considered, and new research is very slow to reach the consulting office. The only treatments that are allowed to be considered are anti-depressants (I swear 10mg of Amitriptyline can knock out a shire horse for 24 hours…) and my old ‘favourite’ CBT, while the well-documented sleep aspects of the condition are completely ignored.
I’ve had the fatigue downgraded to mere ‘sleepiness’ , which makes it unworthy of any treatment, and any indications that there might be something else hiding behind the incredibly wide veil of Fibromyalgia as simply something I’ll have to live with. I’m often left wondering whether my GP is hoping that I’ll end up in a wheelchair or as another client for Dignitas. But despite all of this, I’m still extremely concerned about using the small ’s’ word in front of a doctor lest they want to transmute it into the big ‘A’ word…
I have written before about how detrimental it can be for a sufferer of a physical illness to have their symptoms dismissed as manifestations of a somatoform condition – I myself wonder if the full movement of my right arm would have been restored by now if treatment hadn’t been delayed by five or so months by a doctor who believed my illness was ‘all in my head’. And there can be little doubt that gender bias in medicine is one of the reasons that one in three women in the US dies from treatable heart disease, something that is still considered a man’s illness, while the figure for men is one in four and falling.
But there is an additional problem with the over- diagnosis of psychological ailments, and that is the unspoken effect on those who actually do suffer from illnesses such as Depression and Anxiety.
The Mighty recently asked sufferers of Anxiety Disorders to describe what it feels like to live under the weight of such a disability.
“Anxiety is such a powerful emotion. It’s hard to explain how it really truly frightens you to the point where is controls your life. It feels like being in an emotionally abusive relationship with the negative thoughts in your head. No escape.”
“It’s just like depression in the sense that there isn’t necessarily an answer to the question ‘what are you depressed about?’ Depression is an illness. It’s ‘about’ an illness. ‘What are you anxious about?’ Who knows?! I just am. The end.”
“It affects every facet of my life. The constant tension, irritability and fear seeps into every part of your daily existence. Snapping at the people you love because they’re doing something making you more tense, sleeping so lightly that every noise wakes you up. Anxiety shapes your day.”
“‘Anxiety’ is a term used very loosely. It’s not often that people acknowledge just how debilitating it is.”
A cursory glance at the handful of quotes I’ve displayed above presents a clear picture of a debilitating, engulfing affliction that is often triggered by what non-sufferers would consider to be little or nothing.
Does this seem, in any way, to be on par with the general stresses of life on this tilted world? I’m purely speculating here as this is not my personal experience, but it would appear that clinical Anxiety is analogous to living in a warzone without ever being able to witness the fighting – almost as though the body is reacting to shells and gunfire that nobody else is privy to.
It is true that there are physical manifestations of psychological illnesses, but it is imperative that doctors learn to tell the difference. Telling someone whose palpitations are caused by something corporeal to ‘take it easy’ may well help to settle the symptoms somewhat (I know well enough that running up a flight of stairs like it’s still 2011 will probably increase my risk of meeting the Grim Reaper at the top…); but to say the same thing to someone on the Anxiety battlefield is meaningless. There’s little difference between that, and telling someone who’s been hit by a car to ‘have fewer broken bones’.
If I’m struggling to get out of the house, it’s usually because I feel as though an Incubus has been squatting on my chest all night, not because my mind is going ten-to-the-dozen with all of the potential worst case scenarios. For a doctor to suggest otherwise means that firstly they don’t believe me, and secondly that they do not truly understand (and possibly cannot really spot the signs of) what someone with the actual disorder is going through.
When the word anxiety (with a small ‘a’) is thrown around carelessly, it undermines the experiences of those who truly know what it means to have their psyches force continual trauma upon them, and diminishes understanding of the illness within wider society. Akin to the way people use the word ‘depressed’ when they mean sad or low not realising that like Cancer, Depression can be a fatal illness, Anxiety could become a meaningless term that gets dropped whenever someone feels apprehensive about a novel situation or overburdened by their workload. This, in turn, leads to the rise of one of the most irritating scenarios for the chronically ill – someone who claims to have the illness in question informing someone who actually has said illness how to ‘fix’ themselves. “Oh, you have anxiety! I had that. You should take up yoga…” Not to mention the ‘trickle down’ effect of doctors taking the condition less and less seriously, and believing that they can just ‘medicate it’ away.
Comparing regular human stress (of which, by the way, the chronically ill still have more than their fair share…) to clinical Anxiety is like comparing getting shampoo in your eyes to being legally blind – both inaccurate and unhelpful.
And, as I mentioned at the top of this post, it makes people like me apprehensive about asking for any kind of psychological safety net as the risk of unwittingly acquiring the lazy diagnosis of ‘anxiety’ is both too great and too damaging.