“The rules of life when you have a disability or illness are different. If I want to achieve anything, I have to bear this cost. But what do I get in return for the pain and lost time?
“I get purpose. Vitality. The things I do make me feel alive for a moment.”
Managing daily chronic pain due to multiple long-term conditions, Robert Joyce wondered what it would be like to do the easy thing. To slip into bed and let his dark thoughts consume him.
But then he realised what truly drives him is helping others. “Otherwise,” he says, “I’d end up detached from the world. I don’t want that.”
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For the last ten months, I have been hosting a webinar about finding resilience when living with progressive multiple sclerosis (MS).
Each session takes about an hour, but the short event greatly impacts my day.
My pain levels increase, and I have little option but to escape to my bedroom, close the blinds and try to distract myself from the pain. It is hard - really hard - but I chose to be the host. This is the cost to me.
It appears to be masochistic behaviour, deliberately hurting myself. I am sure when healthy people read this, they will wonder about my decisions. It's something I question too.
Why do I place myself in harm's way?
Doing what I love gives me purpose
After much thought, I have realised the rules of life when you have a disability or illness are different. I cannot enjoy life the way the healthy can. I spend every day managing my condition because of, and despite, the pain. I push myself to take on activities I know will cause physical discomfort or make my fatigue levels rise like a tsunami. This is my base level.
If I want to achieve anything in my life, I have to bear this cost. But what do I get in return for the pain and lost time caused by these consequences?
I get purpose. Vitality. The things I do make me feel alive for a moment.
I am doing something of value that can positively impact my community. I no longer feel like a "drain" on society but a valuable contributor in my small way. This sustains me, and when I wake in the morning, I don't focus on the negative but am lifted up by the positive impact of my actions.
I will lose my soul if I am unwilling to accept the pain.
Weighing up the potential values and costs
However, I don't play fast-and-loose with my health entirely. Every activity or task has been weighed carefully in my mind as I consider how the value outweighs the cost.
What most often "wins" for me is doing something for someone I love. You'll often see parents take on the impossible for their children, and I relate. I have often pushed myself past my limits just to see some joy in the eyes of a loved one. It lifts me.
MS and chronic illness has a huge impact on my finances
Financial reasons are another reason to accept pain. Living with a disability and/or chronic illness can often mean we cannot earn a living as well as the healthy. Even making a basic income comes with a cost.
There were days when I arrived home after working a full day, and the pain was piercing. It would take me a whole day to recover, but it was what I had to do to earn. It was hard, and I persevered for a long time, accepting the repeating cycle of work for one day and recovering the next.
But the time came when I could no longer do the one-day-on, one-day-off routine. It started taking me two days to recover after a shift. It couldn't continue.
My experience with MS can help my community
My last reason for accepting these challenging costs is doing it for my community. I share my experience of my illnesses in several ways: posts like this, on social media and through webinars and podcasts. This has resulted in people contacting me to thank me for sharing how I have learned to live with MS, chronic pain, sarcoidosis and asthma. These words lift me and make me feel like I have a purpose.
There are days when I overexert myself and end up in bed, exhausted beyond belief but sleepless due to the pain. But I don't get angry. I'm not morose or crying in frustration. In a strange sort of way, I'm... happy.
Because it's not for nothing. This pain I feel has a reason. It's self-inflicted, but I do it to help others or brighten someone's day.
Likewise, I've learned to accept pain for income, though this isn't as rewarding. Before I understood my motivation, the pain was worse, almost too much to bear. I felt I was being punished for trying to live a "normal", healthy life. Now that I have my rationale, the pain is easier to manage.
I want to do what’s right, not easy
Going through torture to live my life isn't fair, and I've made peace with that. If I got stuck in a loop of hurt and resentment about the cruelty of chronic illness, I'd end up totally detached from the world.
I'd sink into what's easy, not right. I'd draw the curtains, put myself to bed, and wallow in self-pity. I'd launch myself into a negative spiral of ruminating on my disability and pain and let myself slip into full-blown depression.
That's a dark picture indeed. I don't want that.
So I beat on, a boat against the current, pushing forward in bobs and spurts to do the things that make me feel worthwhile.
I have one life. I choose to live it, not see it waste away.
NPS-IE-NP-00489 August 2022