(If only the road to acceptance was this straight.
And the bumps in the road as small as those tiny corrugations.)
And the bumps in the road as small as those tiny corrugations.)
I've
had a few people message me lately asking how I came to accept being
ill and all it brings. I've written about it before, but long-term
readers will know that acceptance and the way I react to being ill
isn't really a steady path. It's not like a twelve step program. It's
not clear and straight. It is punctuated with ups and downs. Sucker
punches and dark valleys. And moments of shining light and joy.
Living with chronic illness is living with constantly moving goal
posts. Just when you think you've got it sorted, WHOOMPH, it pulls the
rug out from under you and you have to claw your way back. Acceptance walks
hand-in-hand with a special form of grief that only those with
chronic illness understand. And if I had to say one thing about acceptance, it's that
there are no easy answers or short cuts.
I
am better at accepting that illness is part of my life 95% of the time. But every now and
then something arises to smack me back down to the ground,
often sticking the boot in for good measure. I can tell myself or others to just
be positive, or whip out an inspirational quote or three, but
sometimes that just won't cut it.
The
last six months have been a rough. Healthwise I've had more setbacks/exacerbations than I can count and more frustration and
disappointment than I really wish to acknowledge. In December when I
realised I could no longer move my toes on one foot, it was the final
straw. And I ended up in my bedroom sobbing into my pillow. With
illness there are points you reach where it is just too much, and
this was one of those. At those times the only thing left is a big
black hole that feels like it will never be filled. And the only
thing that stops the tears is when you are simply so exhausted from
the crying you fall asleep. Since then the exacerbation has meant
that physically I've gone backwards and the toll emotionally and
mentally has been pretty big. I'm slowly digging myself out of it
now, but I've cried and been angry and wanted to hide from the world.
I have let important opportunities slip through my fingers because I
simply couldn't face them, great as they were, and deal with
everything else that was going on. I let everything good and bad go
by the wayside whilst I used my non-existent reserves to keep a
single finger in the real world. There are still tears. And anger. And cursing of the universe. Thankfully there are more good moments now. But it's still tough and requires a lot of my reserves to keep actively seeking and embracing the better times when they occur.
Does
that mean I don't accept being sick?
No. Acceptance doesn't mean I face those times with pluck and perkiness. But I accept illness is part of my life nonetheless.
So
how do I reconcile those moments of sadness or anger with
acceptance?
With
a little self-kindness and a worldview that embraces more than the
black and white we are often sold.
It
means that it gets tough at times. The bumps in the road are
sometimes the size of mountains. Everest-sized mountains. I can
accept that I am ill and curse the universe at the same time. Because
life isn't a pithy inspirational meme. It isn't clear or clean or
perfect. Acceptance doesn't means things are all rosy. It doesn't
mean that you don't get sad, or frustrated, or angry. It also doesn't
mean that you are giving up or giving in. I'm not zen 24/7 and if I
was I would probably need to be studied, or medicated, or a little of
both.
For
me acceptance is many things. It was getting to a point where I recognised I was
wasting every shred of energy fighting and searching. So much so that
I wasn't living life any more. I was fighting and I kept getting
worse. And I was miserable because everything revolved around a fight
I was so clearly losing. There was no balance in my life. Just a
bucket load of burden I'd created for myself. That realisation was my
first step.
I did start to actively look for joy in my world. And sometimes that has meant forcing it. I would make myself sit out in the garden when I least wanted. I would turn off my woe-is-me music and put on some belting rock tune. I would make myself simply stop. Illness can be bleak and scary at times. Its easy to become overwhelmed. And to both feed that belief and see everything through that filter. I started making sure I found something good in every day. Warm toast in bed, pretty flowers on a weed, a pretty water glass. Little things. Because little is doable. Really seeing and embracing those moments doesn't directly lead to acceptance, but it helps you refocus so you're in a place where you can start the process.
I did start to actively look for joy in my world. And sometimes that has meant forcing it. I would make myself sit out in the garden when I least wanted. I would turn off my woe-is-me music and put on some belting rock tune. I would make myself simply stop. Illness can be bleak and scary at times. Its easy to become overwhelmed. And to both feed that belief and see everything through that filter. I started making sure I found something good in every day. Warm toast in bed, pretty flowers on a weed, a pretty water glass. Little things. Because little is doable. Really seeing and embracing those moments doesn't directly lead to acceptance, but it helps you refocus so you're in a place where you can start the process.
Acceptance
doesn't mean ignoring illness (although I may sometimes put my
blinkers on and pretend because that's just what you need some days).
It means that I do what I have to do to manage my illness. I take my
pills and put on my compression stockings. I pace myself and use
mobility aids. I get my pacemaker checked and do my exercises. And
then I get on with life. Illness is integrated into my life rather
than being the central and defining feature. I give it a place of my
choosing, rather than trying to erase it completely.
Acceptance
isn't an instant process. It also isn't a perfect process. So often
we are made to feel that we should find acceptance, fight the good
fight, be a perky positive emblem to which all can aspire. But those
are burdens we place upon ourselves. We let ourselves believe that
everyone else has it all together. When nothing could be further from
the truth. We expect we should be the perfect patient. And
perfection has no place in illness. How could we ever expect to reach
acceptance if we are continuously using a lie as a measuring stick.
I
don't necessarily accept that I am ill. But I do accept that illness
is a part of my life. It's a fine distinction, but an important one.
It's more about putting illness in it's place rather than letting it
define me. I live with illness, not despite illness. And in doing so
a lot of the power I imbued it with was removed. I made a decision to
change my approach. I also decided to give myself some slack.
I
accept that there will be times that it is harder than normal. I
accept that I will get it wrong. That I will get disheartened and
cry, but I won't beat myself up when it happens. Illness is hard.
Accepting that it is part of life doesn't mean that I always manage
it well. It doesn't mean that I wont cock it up completely some days,
or weeks or months. I try and give myself some compassion. Because no one
gets it right all the time.
I
am a big fan of getting support, especially in the form of a mental
health practitioner. A psychologist or counsellor who specialises in
medical issues and chronic illnesses can help you navigate the path,
learning the tools to make life more bearable and the difficult times
more manageable. We all need to create a personal arsenal to deal
with whatever chronic illness we are dealing with. Just like we take
meds to help with blood pressure or heart rate, we can use the skills
of a psychologist to help with the complex emotions that arrive with
illness.
The world of illness is punctuated with words like should and myths of the perfect patient. We are made to feel like there is an ideal to which we should all aspire and if we don't get there we have failed. But life isn't like that. No one has it together all the time. And no one always gets it right. And that's okay. Becoming chronically ill can be incredibly challenging. And learning to accept that illness may be a part of your life for a long time, or in some cases forever, is a continuing process.
Acceptance doesn't mean perfection.
Acceptance doesn't mean that you are always peaceful and happy.
Acceptance isn't static.
But....
Acceptance is about being kind to yourself.
Take away all the shoulds and myths of perfection
Be kind to yourself.
And acceptance becomes far more achievable.
Michelle
I
break tradition, sometimes my tries, are outside the lines
We've been conditioned to not make mistakes, but I can't live that way
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
We've been conditioned to not make mistakes, but I can't live that way
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Unwritten, Natasha Bedingfield
Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.
