BY JULIA NELSON
The darkness is all-encompassing.
I can’t breathe, and there is an almost unbearable weight on my chest.
I feel like I’m being crushed and the pain is excruciating.
All I can hear is thump, thump, thump – although at this point I’m not sure if it’s the beat of my heart, or if it is more earth being thrown on top of me.
Fear has taken over every cell of my body as the panic rises within me, my face is burning hot, yet my extremities are as cold as ice.
The level of terror I feel should prevent me from moving. But, from somewhere deep inside of me, the will to survive surges through my very being and I desperately try to claw my way out, frantically scraping the earth away, exhausting myself in this seemingly futile effort.
Nevertheless, I continue through the haze of exhaustion. My clawing becomes slower and less effective. I can feel the will to go on slipping away from me.
And then I see it.
The smallest pin prick of light. It’s so far away that at first, I think I have imagined it.
But as it opens out to the size of a petit pois, I can’t deny it. Despite the pain and exhaustion, I get a surge of hope and this gives me just enough energy to go on.
1. What Having a Chronic Illness Feels to Me
The cycle repeats at varying intensity and intervals over time. Let me tell you what I mean.
When I was first diagnosed with fibromyalgia, I had already been through months – if not years – of searching for an answer. I was already exhausted and felt broken. But the diagnosis itself was hope for me because I thought that surely in this day and age, pain can be controlled…Can’t it?
Over the past five years, I have repeated this process of being buried alive more times than I care to remember. Sometimes the weight, pain and darkness have been so relentless that I didn’t even believe the light existed anymore.
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2. Experiencing the Darkness
What follows are some examples of the ways that I have experienced this:
Every day that I wake up with no reprieve from the pain and fatigue is like a small handful of earth being thrown over me.
Every treatment that failed to help me was an added bucket full of earth.
Every time I have had to fight for treatment or therapies, another bucket full was piled on.
The words that aren’t meant to hurt but do, like “you don’t look ill,” is another handful added.
Experiencing financial difficulties due to my condition is like a number of buckets full at once.
Each and every time I have had to cancel plans because I have been too poorly is another bucket full.
Being refused financial assistance was like even more being dumped from a height.
Being doubted is more dirt thrown my way.
Feeling like a burden is yet another bucket full.
Fearing the future is an extra-large bucket full.
Fearing being taken through a capability assessment in work represents a new bucket full, each and every day.
People suggesting that losing weight might help – that’s a new bucket full, too.
3. Finding the Light
I’m sure you get the picture of the things that can bring that suffocating darkness, but now let’s look at finding the light.
On the odd days, the pain is less – I can see the pin prick of light in the distance
The hope of a new therapy or treatment – allows some of the earth to fall away naturally
A friend or family member showing me love and compassion with kind words or by doing things to help make my life easier – this feels like they are shoveling the earth away from me.
A coworker or manager understanding and offering kind words or support.
Constantly looking for beauty or hope is like clawing away some of the dirt.
All in all, we cannot rely on nor predict the good days or opportunities for new therapies. The only constants can be our own search for beauty, hope and the kindness of others to help us keep the darkness at bay.
4. A Helping Hand
If you know someone with a chronic illness don’t be afraid to ask how you can help. Often helping the person to feel validated and valued can be enough. Other times we may need help with something simple, like opening a bottle or writing a paragraph. So often those of us with chronic illnesses are terrible at asking for help, and just the offer of help is enough to remind us that the light still exists.
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