In the early years of my illness, I searched desperately for a cure. After diagnosis, I was told by a doctor (who knew less about my illness than the little that I did) that I could expect to recover within a year. Even a year seemed too long to wait for me to get my life back, when I’d been ill two years already before receiving a diagnosis. My GP was much more realistic about my prognosis, telling me it could take years to recover even if I should prove to be one of the lucky few that go on to achieve complete remission. Refusing to accept a prognosis I didn’t want to hear I decided I’d never settle for anything less than total recovery.
Whenever doctors suggested a treatment, I’d agree without hesitation and with no thought for the potential downsides. Why would doctors recommend a treatment that wasn’t bound to work for me? So I took anti-depressants, though I didn’t have depression, and then neurovascular drugs, physiotherapy, graded exercise and cognitive treatments to name but a few of them.
When each of these failed to work (or only made me sicker) I invested all my energy in searching for medical trials, alternative therapies or experimental treatments, often with only anecdotal evidence of their efficacy.
Unwilling to leave any stone unturned in my bid to return to a ‘normal’ life I tried acupuncture, massage, affirmations, raw veganism, mindfulness and visualisation and while they may have helped alleviate the emotional impact of living with chronic illness, they all fell short of providing the cure I was looking for.
After five years of illness, I looked back and realised, not only had recovery remained elusive, I had little else to show for the fifth of my life that I’d been searching for it. I didn’t want to look back in another five years and realise my search for better health had stopped me from living in the meantime, so I decided it was time to stop actively seeking a cure and focus on living life to the best of my abilities instead.
Some people see this choice as giving up, but I call it realism. Without the rigours of hospital visits or side-effects of medications to contend with, my health and quality of life have actually started to improve. Without expensive diets and supplements, my bank balance is healthier too meaning I can afford small treats and hobbies that make tough days just a little bit brighter.
This doesn’t mean I don’t have hope of improved health in the future. It doesn’t mean I won’t consider future treatments my doctor might recommend to me, but I’ll no longer spend all my limited energy, searching for possible treatments while neglecting other aspects of living. I focus instead on making each day of my life, the best day it can be, secure in the knowledge that if a sure-fire cure existed, I’d already have found it, and if one should be developed, the acclaim will be unmissable.
Accepting my illness may always be with me has been a difficult, and ongoing, process; one that many with chronic illnesses must go through, though each in their own individual way. Acceptance is a journey rather than an event and individuals must be supported to do whatever they need to do to come to terms with the probability that life will never be for them as they may once have imagined.
Some make peace with their illness quickly; others may always be looking for the next new promise of recovery. Each must learn to live with their illness in their own individual way.
In learning to live with chronic illness I have had to redefine so many of my values. In society’s eyes, our value lies in what we earn or continue to achieve but when illness leaves you unable to work, and dependant on others, past qualifications and achievements are of very little worth to you. I have had to learn that my intrinsic value exists independent of anything I am able (or unable) to achieve.
So I’m learning to take pride in the small but costly achievements of everyday life, which mean more now than ‘greater’ but less-hard-won achievements of the past.
I’m learning to value the few precious friendships I have less, rather than feel bitter for the many former friendships I have lost.
I am learning to overcome the guilt and shame I feel at needing others to support me both practically and financially instead of being able to manage on my own.
I imagine I’ll always feel some grief for the things I’ve lost or can only dream of, but even if recovery should continue to elude me, I am determined my life will still be worth living.
I choose to live the happiest life I can despite my limitations.
This may not be the life I dreamed of, or the life I would have chosen but which of us (healthy or otherwise) gets everything in life we ever could have hoped for?
The truth is no matter how sick or well I am, there will always be something more I will strive for; something that would make my life so much better if only I could grasp it.
If my happiness depends on attaining what I do not yet have I will never be truly happy, because there will always be something I don’t have or haven’t done yet.
If I can’t learn to be happy right where I am, then even a cure will ever be enough for me. I’m learning to be content with what I have already and though I’ll never abandon hope of a healthier future, I’ll not pin all my happiness on it either.
Some may call that defeatism. I call it living.