What is it like to live with chronic pain? It’s a progression that shakes your world right down to the very foundations of who you are.
Living with chronic pain is a life-altering event, right up there with marriage and divorce, the birth of your first child, and the passing of your parents.
With chronic pain, there’s the before and there’s the after. And there’s no going back to before.
My before was pretty good. I made a good living as a filmmaker and producer. I was an avid golfer, a hiker. A really active father. Movie fanatic, concert goer, lover of restaurants, travel and seeker of new experiences, a very social person. And after? Well...
This is what happened to me. My energy levels dropped faster than Icarus. Chronic pain was beating me up most days. I began to avoid social events because I could only cancel at the last minute so many times. Friends drifted away. The world in which I lived and traveled shrunk considerably. Travel became too hard on me. As for planning, there’s a Yiddish saying: “We plan, God laughs”.
Pain is impoverishing. Our retirement was predicated on working to age 65. Now we’re in the gig economy taking what we can get. Not much out there for people with chronic pain. We dipped into our RSP’s to make ends meet, and now they’re gone.
It becomes so hard to exercise beyond stretching. I put on weight. Pain takes so much away from you, but it leaves the fridge. Fifty pounds later, I’ve just been diagnosed with Type 2 Diabetes.
The chronic pain journey is often like a train ride in a foreign land and this is especially true of prescription medicines: next stop Gabapentin. Soon arriving at Tramadol and Topiramate. We’ll be stopping at the picturesque Dilaudid-Morphine Sulphate… for the next five years. I tried or at least considered many of the treatment options available to me. Diet, exercise, mindfulness, CBT, physiotherapy, biofeedback - many we couldn’t afford, and some were a struggle to continue because of my lack of energy.
By far the worst is how chronic pain affects your family. You have guilt because your partner didn’t ask for any of this, but she carries you on her shoulders nonetheless. Fear of losing your kids, because you are no longer the father you once were. You see and feel them slowly slip away from you.
And so after all this another kind of fatigue sets in. You are damn tired, tired of being suspected of drug abuse at the ER, tired of well-meaning people telling you how much salt crystals and pyramids helped them, tired of being spoken to like a child about tapering, tired of simply not being heard.
Will all this happen to you? Perhaps, but I sure hope not. Knowing that these changes are part of the jungle of facts and emotions that you might have to walk through, I just want to make sure you sharpen your machete before proceeding.
So yes, it has been hard, very hard. But you know we can’t give up. For your family. For yourself.
We can change how pain affects and controls us, and we can draw attention to the fact that so many of us live with chronic pain. Little steps.
For me, getting involved with patient advocacy and speaking up for my community of people in pain has been a huge factor. It has channeled my anger and frustration with my condition and the ‘system’ into positive energy. It has given me purpose and sense of service to others and has got me out of my head.
I am slowly changing my journey of pain to a journey of wellness. And with strength and support so can you. How you choose to do it is totally up to you.
But you have to do it.
This featured story is part of Pain BC's chronic pain awareness campaign for National Pain Awareness Week (NPAW). Find out more about the campaign here.