SatNav has come a long way in the fourteen years since a friend’s device proudly announced that we had reached our destination (a remote Perthshire cottage) outside a hotel in Perth city centre. Just as well, given that Shaun and I chose to live in a location that is best described as ‘between three fields and a wood, opposite a windfarm in rural Aberdeenshire.’
We love the isolation of our house. Every morning and every night, we wake and sleep in blissful stillness. Every morning cuppa is an opportunity to drink in the serenely beautiful views. Every car journey home is an escape from the relentless drive of city life. The fact that we live two miles from the nearest bus service (an impressive two buses per day) doesn’t bother us one bit. Even the fifteen-minute wait for the fire brigade, when I was alone at home with an incandescent washing machine, wasn’t a major problem. I just made sure the cats were safe, closed all the doors and windows, and sat in the safety of the outdoors.
We are not completely isolated, of course. For a start, we have an absolutely lovely next door neighbour (‘next door’ being the other side of her field). We can walk to the nearest village in about 15 minutes (although, a walk to the nearest village shop is not strictly feasible: we’d have to add an hour to those fifteen minutes, and then some). We can drive to most of the places we need to go on any given day, in under one hour. When the occasional heavy snowfall creates 360°of four-foot, frozen roadblocks, there’s still plenty that we can do at home; including work. Even surrounded by a twinkling infinity of snow crystals in all directions, we’ve got a steady green light on our internet connection most of the time.
The internet has expanded my horizons, at a time when I have (literally) sorely needed it. Every night for over a year, woken several times by pain, I have had at my fingertips the means to reach out, to cry out if I’ve wanted. I’ve been able to learn from others who know that pain, and to share what I have learned. It’s been both an education and a distraction to me. I can’t expect Shaun to understand the innermost workings (or rather, malfunctionings) of my uterus, but I can find numerous people who do, just a few clicks away.
Isolation is a major obstacle on the journey of the endometriosis sufferer. To begin with; despite the accessibility of the information highway, most women experiencing the distressing symptoms of this disease have never even heard of it. Doctors and other healthcare professionals will point you in all kinds of directions, spending valuable time looking into various afflictions (sciatica, anyone? IBS? Maybe you’re a drug seeker? Maybe you’re depressed? Maybe it’s all in your head?). You will be persuaded to try a panoply of pills, all unhelpful, with unpronounceable names and unsettling side effects. Friends, relatives and colleagues will be sympathetic, but powerless to help. If you’re lucky (I was), you will be able to take advantage of flexible working. At least; for a while, until fatigue really takes hold. All this time, you’ll be looking for avenues to understanding and relief, as you struggle to meet everyday commitments. Simple tasks, such as climbing the stairs, or remembering what was just said to you, become ever more challenging. Time spent out and about has to be paid for twice over with sleep. At last, you will meet the word ‘endometriosis’. Your eyes will widen, as you realise for the first time that its symptoms are your symptoms. You will learn that there are 176 million sufferers worldwide, and wonder why on earth you have never met any of them. Chances are, you have; but people haven’t really been talking about it openly until now. Finally, you will connect with others who are travelling the same path, and your journey will become a shared one. You will still struggle at times. Merely reaching the milestone of a confirmed diagnosis can be a battle that lasts years. But at least you will no longer be isolated.
Endometriosis is the journey of a lifetime. Of 176 million lifetimes. There is still no cure, the cause is still unknown, and the disease is still poorly understood. I say ‘still’ because I am truly optimistic that answers can be found. Just as I am optimistic that we can beat the isolation. Almost every single one of us has the tools to do that, in our homes, our workplaces, in public and in our pockets. By using one of those tools right now, you are being part of the solution.
Thank you.
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