I think it’s true to say that all chronic illnesses have one symptom in common: Loneliness.
For me, it can be one of the worst symptoms of the lot, often battling it out with Pain and Fatigue to ‘win’ the day and get one over on me. For healthy, socially active and ‘other side of the bars’ people, it must seem odd that a state of mind could ever pull top trumps on a physical pain, but in many ways it does.
To understand how it’s probably best to dissect each symptom: surgical gloves at the ready!
Let’s start with Chronic Pain. In whatever wonderful form it takes, there’s no disputing that this one is unquestionably an evil bastard – unrelenting and utterly vindictive. It takes no prisoners and gives no time off for good behaviour. I won’t woffle on about just how bad Pain can be, as I’ve already covered that here. And here.
But Pain (in its simplest, non-chronic form) is a widely known entity. There isn’t a person alive today who hasn’t felt its wrath, from a grazed knee and pesky splinter to a twisted limb and broken bone. And let’s not forget childbirth – the mother of them all!
This shared understanding of Pain makes it socially acceptable: it can be openly discussed and easily emphasised with. No GP will ever panic if you tell them about Pain, they’ll just reach for the prescription pad (or keyboard, these days) and bombard you with drugs. In the case of Chronic Pain (or mine at least), most of these pain ‘killers’ barely scratch the surface; they’re as effective as a hit man with a cast iron moral compass. But at least for Pain there’s plenty of meds and it always makes me feel slightly proactive to pop a pill.
Then there’s Chronic Fatigue, an equal to Pain in every way. Real, wall-hitting, concrete-encasing, treacle-plodding Fatigue is the undisputed Queen of All Bitches. It drains the life out of life and the fun out of everything. But I’ve already covered my hatred of Fatigue here. And here. And here’s my Top 10 Things That Fatigue Isn’t list.
Unlike Pain, however, Chronic Fatigue has to be experienced to be truly understood. It is not the same as tiredness (that everyday, run-of-the-mill stuff that everyone feels) and nothing else compares. In my opinion, Fatigue is a powerful force for evil: The Dark Side, Dementors, Death Eaters and The Eye of Sauron all rolled into one. It’s impossibly hard to fathom for those with bounce and vigour and this makes empathy rather thin on the ground. There is some, however, as Fatigue can make you look like the walking dead and it’s obvious to all that you’re really not feeling great.
Sadly there are no pills for Chronic Fatigue, but it can (according to the ‘medically’ trained) be aided by rest. And taking it easy. And learning to pace yourself. Please just excuse me here while I roll my eyes. What all this Fatigue and resting and spending time on your own does lead to is… the actual point of this blog.
Loneliness: an entirely different type of beast and the Satan of Symptoms.
For me, Loneliness is something that sweeps in and out of my life, like an all-consuming surge of water in a particularly menacing storm. Whether it comes from nowhere or accompanies a flare, it always takes me completely unaware.
It creeps up on me whilst I’m focussing on Pain. It slinks into the room while I battle Fatigue, filling up every last bit of space until I feel I can’t breathe. It sits beside me when I’m resting, invading my thoughts and slowly drip feeding negativity into my brain. It’s as if the worst of my insecurities and crippling fears are joining forces, playing games with an already fragile mind.
It’s hardly a surprise that Loneliness stands shoulder to shoulder with Anxiety and Depression. They’re like a small coven of witches all hell-bent on dragging me down.
Yes, Loneliness is a bleak and terrible place to find yourself: dark and isolated and a million miles from everything that feels familiar. It has the ability to transform any environment, no matter how safe and secure and make it feel empty and odd. It’s the unsettling feeling that something is ever so slightly out of place, but you just can’t put your finger on what or why.
Loneliness for me is like looking out at the world from behind a set of bars. It’s seeing life carrying on around me, life carrying on without me. And however much love may surround me it doesn’t change the feeling that I am completely alone.
In part that’s because it’s true. Loneliness is something that I often feel and think about but very rarely discuss with anyone. Partly because I don’t want to cause offence to those who are always by my side and partly because I don’t think anyone else would really care. Maybe I’m wrong, but I don’t think so.
The worse part of Loneliness is feeling that it’s so damned obvious that everyone around me should be able to spot it. I really, really want someone to notice how I feel, but of course, it’s as invisible as all the other symptoms so no one ever will.
Even my rheumatologist doesn’t. He’s certainly never asked me whether I feel utterly alone with the collection of diseases it’s his job to treat; he couldn’t be less interested in my state of mind. All he wants it for me to take my meds, never query his opinion and turn up once or twice a year to be ticked off his ‘to see’ list. My new GP also steers clear of Loneliness. Maybe that’s because she can’t afford to open the floodgates and release the tidal wave of tears that’ll inevitably come. She knows it’ll be nigh on impossible to replug that dam in a 10-minute allocated NHS time slot.
So maybe my worst symptoms come down to how much understanding and empathy they evoke. This puts Loneliness on the winning podium as how can there be empathy for something when no one even knows it exists?