One thing chronic illness guarantees is uncertainty.
One thing a global pandemic, in the form of COVID-19, guarantees is uncertainty.
No matter how much we might like to think we have things under control, our bodies, diseases, unexpected life events, loss of loved ones, always find a way of creating times of chaos, confusion, fear and uncertainty.
Sometimes it happens on a daily basis, sometimes every few months or just unexpectedly out of the blue. Whatever the case, uncertainty and facing an uncertain future over and over again, is inevitable.
Yet, we seem to expect every new year is going to be somehow transformed into “happily ever after” at the stroke of midnight on New Years Day.
COVID-19 hasn’t gone away. It’s affecting our chronic illness community, in ways general society are only just beginning to identify.
Those of us who already live isolated lives, are now even more isolated, as carers and friends are removed, reducing further an already limited opportunity to socialise and connect in person.
Access to hospitals to manage our chronic diseases is available, but most chronically ill people want to avoid ER, tests and scans and Specialist appointments, for fear of COVID-19.
We are at a higher risk of contracting Coronavirus and at risk of a severe, life threatening infection.
Our greatest enemy living with chronic disease is fear. It’s really life’s greatest enemy in general.
Fear is crippling. It stops us from moving forward. It sucks hope out of life. It creates conversations in our minds, leading us on a path to despair.
Basically fear seeks to destroy us.
While it’s completely understandable to have times in our lives when we are afraid, we simply can’t allow fear to dominate. Not if we want to move through each day of the New Year with confidence, and the hope of laughter, love and peace.
We might not be able to control our diseases, or this current global pandemic, but we can learn ways to control our fear and replace it with peace and hope.
I don’t have a psychology degree or medical training of any kind, but I have lived with the twists and turns of a progressive, sinister rare disease for nearly 12 years.
Every new health episode has had overwhelming horrors attached and, as a result, I’ve been forced to make life changing decisions along the way.
I’m in the midst of such a crisis right now, as my lumbar spine is crumbling, compressing nerves and breaking facet joints. My cervical spine has begun to collapse severely just before Christmas in a similar way.
The pain and disability just keeps on getting worse and the whole situation is at times simply overwhelming.
More surgery will either paralyse me or worse. My Surgeons are fearful to even attempt a surgical intervention. We’ve agreed, for now, I am better to live a life of crippling pain and disability than take a surgical risk.
Fear has threatened to overwhelm me at times.
Looking forward into 2021 doesn’t hold out much hope for my situation to change.
I don’t want those fears to linger for long though. I simply don’t like that overwhelming, out of control feeling of despair. Life is short enough. I don’t want to waste it in the land of panic.
I know crippling fear only happens when I’m focusing on my health battle, or a life crisis issue. I’m not thinking big picture when fear envelopes me. I’m allowing my disease and circumstances to take control.
My illness is not who I am. It’s a part of me but I’m so much more than someone with a chronic disease.
We all have a life outside of our health issues and underneath it all, our very core, our essence, is still there.
If we can take our focus away from our current uncertainties, for even an hour, and focus on something we love in life, we can begin to clear our minds so we can start to find ways to face an uncertain future.
This is more important now than ever, as we grapple with our own chronic illness future, alongside the ramifications of a global viral pandemic.
Facing The Uncertainties
So how can we face an uncertain future when a diagnosis or new symptoms are just downright terrifying?
How can we cope with our existing disabilities under the threat of an unprecedented viral threat and a world still basically in lockdown?
It’s not easy but it is possible.
Fear tries to remove hope, so I’m going to start right here.
Without hope we are lost.
I have my faith which helps me considerably. There’s a beautiful little hymn which sums up my first step towards restoring hope and turning my back on fear.
O soul, are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Savior,
And life more abundant and free!
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.
If I just look to my own strength and try and journey through a dark period on my own, I’ll fail miserably.
When I pray and leave my troubles in God’s hands, a sense of overwhelming peace floods my soul. My life still has a purpose and it’s not in the depth of the fear seeking to overwhelm it.
Praying is in essence talking to a friend.
Sometimes fear cripples us so much it prevents us from reaching out to others.
The more we isolate ourselves, the more our fear has the opportunity to grow. Alone with our own thoughts, our own conversation, fear is winning.
To reach out to others through a text, email, phone or video call, and let them know what’s happening in your life, is absolutely freeing.
Suddenly you are not alone. You can hear a voice other than your own. A voice of reason perhaps helping you through the dark days. A comforting voice letting you know you won’t be alone even if the path ahead is uncertain.
A flicker of hope begins. Even if it’s just enough to begin to give you the confidence to know you will find strength for the uncertain future….it’s a start towards turning your back on fear.
It’s a start towards facing the uncertain future.
Just Do It
I know many people with chronic disease feel their friends and family don’t understand and you don’t feel confident opening up to them. You may feel you’re a burden or they are all tired of your illness. In some cases it might be true, but more often or not, these are messages fear likes to give us.
Sometimes we just have to decide to trust our friends and family. We might be pleasantly surprised at the response if we decide to kick fear aside and reach out anyway.
There are other ways to share our fears and allow hope in. It’s why I founded my Facebook support forum Medical Musings with Friends. It’s always a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits anyone living with, or caring for someone, with chronic disease.
Sometimes we just have to do it. Send the text you really want to send asking for help. Make the phone call to a friend or family member letting them know you have another health challenge and need to talk about it with them.
Just do it. Give hope a chance to ignite its flame. Don’t allow fear to cut you off and leave you feeling helpless and crippled. Our diseases do a good job of that without any additional help from our own fears.
We are all facing an uncertain future at the moment, the healthy and unhealthy alike, so please know you are not alone.
Due to the pandemic others are gaining a better understanding of what it’s like to be isolated. It could be the perfect time for distant relationships to reconnect.
Reaching out to crisis lines, family, friends, online support groups, are all ways to start you on a journey towards accepting the next leg of your chronic illness adventure, and the uncertainties of living in and through a global pandemic.
Once you open the gate of communication with others, you’ll be surprised how much lighter your burden will feel. You’ll be surprised at how much clearer your thinking will become.
You’ll soon be making strategies to deal with your uncertain future without even realising it.
My New Year Plan
I definitely need a new year health plan to reignite my confidence for the future.
I have had the same medical team for 12 years and most of them are still crucial to my care. I do however have a couple of key Specialists who are no longer working for me, or with me, in the way I need. Partly it’s because my rare bone disease is not something they are equipped to manage.
As my disease has progressed it’s become clear I need three new Specialists with particular skill sets. A Rheumatologist, a Dermatologist and a consultation with an Infectious Disease Specialist.
So, I’m putting these referrals in place and feeling very confident this is the right course of action. My New Year is starting with a positive plan and igniting a sense of control and hope.
Taking action when a path is uncertain is always a good step forward to better days.
So, whatever is holding you back from feeling unable to move forward, think about what steps you could take to create a New Year Action plan.
Even focusing on just one area of your life causing fear and working slowly to remove the fear, will see you soon back on track living life with more certainties than uncertainties.
Just do it.
Action can and will replace fear, with hope and certainty for a brighter 2021.
Happy New Year…..It is possible!
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you prefer an audible version of more blog posts, please check out my Podcast, Medical Musings With Sam
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
If you would like to read a little more about my journey, here’s the link to My Story