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Why I've Struggled to Accept My Recovery From My Chronic Illness

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The disconcerting dance of recovery. Since getting sick with myalgic encephalomyelitis/chronic fatigue syndrome over two years ago, reaching the recovery phase is something I have longed for, dreamed of, imagined feverishly. Watching hungrily from afar, it seemed like the uncomplicated phase, where you witness the return of your former life, watch the fatigue and daily symptoms progressively drop away as you pick up where you left off. A blossoming. A returning. Reborn.

Alas, in a cruel echo of this confounding illness, it has proven to be anything but simple. Recovering is hard. This might seem counterintuitive at first. Living with a chronic illness is hard.

Not being able to get out of bed or leave the house is hard. Barely being able to tolerate noise or light, or do anything that makes you feel like an actual human being is hard. But how on earth could getting better be hard? Let me explain -with an acknowledgement here that I am extremely, super dooper lucky to be in the position where I can call myself in recovery. There was many a day I did not know if it would happen, and I remain acutely aware of the many thousands for whom recovery is not possible or not within sight.

I liken recovery to a shedding of an old, worn, and perhaps comfortable skin. We chronically ill work really hard to accept our diagnoses, our newfound limitations, that this disease is now irrevocably a part of us. It does not define us, it is not the totality of who we are and what we represent; but it becomes a necessarily familiar bedfellow.

Recovery asks that you reject that acceptance. That you cast off that familiar nightgown, slip from under the covers, and face an unfamiliar and at times scary day. Don’t get me wrong- it is also a glorious day, with streaking rainbows and a chorus of birds, but it can still be shockingly unfamiliar and totally overwhelming.

In recovery, you have to learn to re-trust your body almost daily. As the goalposts shift, and shift again, you experiment and sometimes fail and sometimes win, and find your new baseline over and over.

This can be exhilarating and terrifying with the ever present threat of relapse, crash, payback. You also occupy a certain liminal space between two worlds. Not yet fully functioning and within the world of the “normal,” it can be hard to participate in conversations about work and other daily privileges, and yet you might seek to distance yourself from the discussions amongst your chronic illness community as you progress beyond their experiences.

Venturing further and further out of the house, for longer and longer periods, I sometimes find myself gazing around myself in awe. Wondering what everyone is rushing for, how they manage to function at their jobs for eight hours every day — without a nap! The diversity is shocking.

So many faces, and noises, and smells. I am regularly overwhelmed, like a small child. I also feel a little alien. As if everyone glancing at me as they pass can tell that I do not quite belong here, that I am not yet a fully integrated member of society – a sort of dis-abled interloper creeping moment by moment back into able-ism.

For me, one challenging part of beginning my recovery has been believing it. It has taken me two months of steady and consolidating gains to really truly trust that it is happening. It is a thing that I can now claim and own, and finally, finally, get excited about. I have found this bizarre – why has the one thing I have wanted the most in the world for the past two years been the thing I have been unable or unwilling to embrace? The truth is that the stakes are too high. Having experienced what felt like the beginning of recovery multiple times before, only for it to vanish almost overnight, is devastating. I am like a scorned lover distrustful of love, only able to open my heart to persistent devotion. Of course, this is a pretty clear coping mechanism, one that makes sense in light of a chronic disease characterized by regular setbacks and “crashes.”

And then there is the future. What happens next? Who am I now? At what point do I say “I’ve got this,” I can do this chore by myself, manage that activity again, start a job. Like anyone who has gone through a kind of trauma, or catharsis, I am struggling a little to define “me” and who I am in this brave new world of being healthy. The thing is that I am actually a new me and there will be no returning. And this is the hard but necessary truth – recovering means moving ever further away from our pre-illness self, she who we longed for with an ever-present ache, as our experiences leave indelible marks on our bodies, our souls, our psyche.

I think the crux of my dilemma with recovery is that I am striving to find a way to honor the sick me through this process. The me who has been through a really tough, hard time. The me who worked really hard every day to survive with compassion and laughter and kindness intact. The me who learnt so much from those times of darkness, learnings about struggle, and strength, and vulnerability, and what is ultimately important to me, that I want to take me with as I transform into an illness phoenix. Rather than shedding my debilitated ill self as if a bad dream, I will craft those experiences into a light transparent skin I will wear with confidence and pride through the rest of my vibrant, varied, bloody brilliant life.

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Thinkstock Image By: Orla

Originally published: February 22, 2017
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