I am writing this piece on around six hours of sleep since the start of the weekend. Today is Monday. I am a zombie. Emotionally numb, yet physically, and unfortunately, far from it.
I’ve spun so many plates in what would have been a period of rest for many that the room now appears to move a little if I close my eyes. My balance is off. I feel nauseous from the exhaustion. Unsure of my footing, much like my relationship with arthritis.
Everyone assumes our condition is all ‘pain and swollen joints‘, but the reality is far more complicated. There are many layers to this onion of so-called ‘invisible illness’. Which, as I sit on this bathroom floor scribbling this down, sweat pouring from my brow, unsure if it’s from the pain or lack of sleep, doesn’t feel very invisible to me. Not if you’re in this windowless room, anyway.
For those who haven’t caught a glimpse – a bitter taste of this world through either experience or the support of others, let me cast some light on this place so rarely seen and talked about far less.
Pain is but a spark in the fire
It’s obvious why pain is the thing most associated with our condition. On the face of it, it’s the most obviously impacting element of arthritis in our lives, but it’s also the most relatable element of our disease. Virtually everyone has experienced physical pain or injury in their lives, so it provides a solid platform of understanding when trying to discuss the experience of arthritis with others.
‘Remember that time you *insert painful event here*, well imagine feeling that constantly, in multiple places‘ is something I have caught myself often saying. But upon reflection, the pain is just the spark. A minor inconvenience, similar to a nagging feeling of guilt after a poor personal decision – it’s always there, chipping away at me, wearing me down, but it’s not that intense feeling of burning in my joints that’s the problem; it’s the situation and everything that comes with it. It’s everything that comes with pain that impacts my life the most. Allow me to explain.
So tired of being tired
Pain is the thing that we tell people is the problem. As frequently as somebody with chronic illness says ‘I’m fine‘ when they’re really not. It’s the easy answer, but it’s only one side to the story. I’ve already mentioned the impact on my sleep. I would take the pain every day of the week (if I had a choice!) over this horrible part-intoxicated, part-out of body experience that seemingly comes with extreme exhaustion from days without proper sleep. That sickening feeling of nausea in the pit of your stomach, accompanied by sweats, thirst and an inability to order your thoughts. It’s a feeling I first experienced from high school sleepovers and parties, where you’d operate the next day feeling like you were barely alive. The difference between those parties and deprivation of sleep due to pain is this lasts far longer than a weekend, there were no stories that you will recount with a fondness for years to come, and nobody had any fun.
Those nights are some of my worst experiences with arthritis. From feelings of separation and loneliness in hospital wards as a child, where I had nothing to entertain me other than the gossip I could overhear from night staff whilst every unfamiliar child around me slept, to today, where I sit alone downstairs and watch the early hours pass as my family sleep. Wondering how on earth I find the strength to be a dad, a husband, employee or simply a functioning human for another twelve hours without crashing my car or falling down the stairs.
It’s not the permanent pain from our conditions that all too often brings such tragic and upsetting ends to people’s struggles. It’s the isolation—the loneliness. The feeling like nobody understands and the guilt you place upon your shoulders for not being all those things you so long to be if you just weren’t so f*cking tired all the time. The guilt eats away at you, like water dripping onto rock over thousands of years. The missed events, those days you have to coast playing with your kids because you have nothing left in the tank for the plans you originally made. All those times you didn’t smile because even that hurt your face.
Like the water, even the smallest, most delicate things leave their mark if given long enough. And after over 25 years of living with arthritis, those thoughts and feelings have left their scars. Huge cavities that still trip me up today.
Trying to be normal
With that little peek behind the curtain into this dark, windowless room, filled with sweat, tears and isolation, here comes the issue. First and foremost, we talk about our pain. I do it myself, to the point where I’m fed up with hearing my own complaining. Then occasionally, we maybe talk about fatigue. However, my experience is it’s not well understood – with people assuming you’re just ‘a bit tired‘. Finally, we perhaps mention the pills or swollen joints – and this is where the assumptions come from.
Yes, there are idiots out there. A minority of people who discriminate and hate, but many of the assumptions we encounter in everyday life come from a good place. Hence, the bits we talk about. So when I call in sick for work with ‘pain’ because I don’t want to have to explain or make somebody uncomfortable with details of depression, anxiety, fear and how I cried in the bathroom so my son didn’t see me upset, I am, of course, fuelling the assumption that pain is my biggest problem, when it really isn’t.
So nobody outside of this windowless room knows the struggle that goes on within—the plate spinning. The multiple layers of complexity that come with living with a variable condition, which means that today I can be out jogging and tomorrow writhing around in agony, unable to walk. The mental health strain of all that uncertainty – not just dealing with pain, but managing lack of sleep, cancelled plans, missed opportunities and living in constant fear for your career and family’s financial security.
So when we talk about arthritis and similar conditions being invisible, it’s because, in my experience, we’ve made them as such to try and be normal. To avoid unnecessary attention, certainly in my case. But normal is simply conforming to a standard – an unwritten majority expected behaviour. Well, I’m trying to set a new one—a normal where we talk about our challenges, whether people feel uncomfortable hearing them or not. As sharing these experiences, educating and kicking open the door to these windowless rooms to discussions and questions is the only way to change attitudes.
This is why I advocate.