Crippling. Exhausting. Unfair. Endless.
Those are just some of the words that spring to mind when trying to describe living with chronic pain and the constant battle it leaves you fighting. But the truth is, words simply can’t bring to life the true physical, emotional and mental torment that fills your days. This means that for many chronic pain is something of an enigma because unless you’ve experienced it first hand, it is near impossible to truly understand.
I know something of what it can be like. Chronic pain left me with shooting pains searing along my leg and into my back. There was no let up. I was unable to sleep properly, unable to do some of the most basic things around the house. Tying my shoelace was near impossible. It was a constant in my life that never left no matter what drugs I took, what position I moved into, or how hard I tried to remedy it.
Physical pain is an unwelcome guest that attacks you every day. It is an abuser who makes you lose faith in your body, its beauty and its power. It grinds you down, slowly stripping away your self-confidence and optimism. It makes you start to forget who you are and what you are other than someone living in pain. It isolates you, limits what you do and who you see. The pain is all-powerful and all controlling, but what the relentless pain did to me mentally and emotionally was the bigger problem.
Finding an even keel became impossible as my emotions became rolling waves of frustration, anger, loneliness, sadness, bitterness. The shame was even worse. I was ashamed of my body - for failing me, for putting weight on and feeling unfeminine. I was ashamed of myself - for feeling so scared, for not being able to admit how much I was struggling, for being prescribed something to help with my anxiety and to numb me emotionally.
I turned away from those closest to me who wanted to help. I pushed my partner away and wouldn't let him care for me, even though he was there wanting to. I refused to let friends in even when they were banging on the door because I didn’t want to have to admit how low I had become and how lost I felt. I lost sight of who I was as the pain claimed my identity. I shut down and disengaged from myself.
I have now been pain-free after undergoing spinal surgery nearly 18 months ago. I’ve spent a lot of time reflecting on that period of my life looking at how this affected me and those around me, considering the things it taught me about myself.
There were a few things that helped me as I battled both with my physicality and how it affected my mind. Initially, I couldn’t articulate how I was feeling, so I shut everyone out at a time when I needed people the most. Breaking through this to be able to communicate my emotional pain lifted a great weight from me. I saw my GP, who was great and helped me to identify what I was feeling. Having a language for my emotional pain that I could then share with my loved ones was invaluable.
My GP referred me to Cognitive Behavioural Therapy, which really worked for me because the sessions enabled me to focus on the impact that pain was having upon me mentally, by helping me to break down my thoughts and notice the emotional triggers so that I might manage them.
Becoming more active was difficult but finding things I could do helped me to reconnect with myself. I knitted and I sketched which helped me to focus less on negative thoughts and knowing that I was creating something was good for my self-esteem.
Today I know that I am lucky because the pain has gone. However, I still have moments where I am taken over by complete panic. A slight twinge in my leg or back and I can feel my stomach flip. Even though this fear is fading with time, I’m not sure I will ever shake it entirely. I have the physical scar on my back that I will carry for the rest of my life, but I know that I am also carrying mental and emotional scar tissue that will stay with me.
I’ve realised that although I hated my body at the time, I shouldn’t have, because my body handled the pain. It took the punches and every day it found a way to persevere. I also realise that I shouldn’t have been so hard on myself all the time, I am after all only human. The chronic pain was hard to deal with but the hard time I gave myself made it so much worse.
Today I recognise that the voices of those experiencing chronic pain are missing from the increasing mental health conversation. Maybe they fade into the background because people living with the pain are just trying to make it through the day, every day and of course, they are also facing the challenge of being present, physically in places and therefore, in people’s consciousness.
If my experience is anything to go by then chronic pain can strip you of your voice as the pain consumes you. It feels as though there is a need to give those living with chronic pain their voice back by providing them with a way to be heard, somewhere to be understood and most importantly, a safe place to be listened to without judgement. The unrelenting pain takes so much out of you that even saying something is a feat in itself.
So, I'll finish this with a direct message to anyone living with constant pain - I am here and I am ready to listen when you are ready to share.
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