Did Chronic Pain Make Me a Nicer Person?
How Rheumatoid Arthritis fostered my personal growth
I am not the person I used to be. The phrase usually conjures up the image of a person diminished in some way. A negative connotation, if you will. But on the contrary, I feel I am more than I used to be. In some ways.
Impulsive and judgmental, I used to see things in black or white, and didn’t always appreciate an opposing point of view. So what changed?
Now, I have more fortitude, more tolerance, more restraint, more humility, more empathy, more gratitude. I try to remember that everyone is fighting a battle that I may know nothing about. After all, I am.
Living with the daily challenge of Rheumatoid Arthritis and the accompanying chronic pain has granted surprising gifts. The conventional wisdom is that it would make someone grumpy, grouchy and generally cantankerous. Don’t get me wrong — I can still be all of that at times. But who do I like better — me with RA, of course. I am more content, even happier despite the RA.
I try to remember that everyone is fighting a battle that I may know nothing about. After all, I am.
So what does it feel like to have RA?
The nature of autoimmune disease is to attack in cycles, to “flare” in between short periods of reduced disease activity. Well controlled RA may have longer periods between flares but poorly managed disease can result in flares every few days, or multiple flares simultaneously.
The physical experience of an RA flare feels like sustained pressure in the affected joint (as the synovial capsule stretches to accommodate the inflamed synovial fluid), with intense sharp pain on movement and a burning sensation deep in the joint. Tender, red, warm, swollen joints which throb even at rest. My hands and wrists are my worst joints and it just makes you want to cradle the hand close to your body and hide from the rest of the world. Note to self: been there, done that; doesn’t help.
An RA flare will take its own time to subside, usually a few days, leaving an almost incapacitating fatigue in its wake. When all is said and done, in an autoimmune disease, your body is fighting a battle against itself and who wouldn’t be laid low by that.
RA fatigue has been described as multidimensional, with physical, cognitive, and emotional components. The cause is thought to be chronically high levels of inflammation which create imbalances in cellular energy availability and expenditure, resulting in fatigue.
Fold in the emotional experience of living with an unpredictable autoimmune disease that frequently flares with chronic pain and you have a recipe for a change in the direction of your life. Relationships change and not always for the better, work situations change or end, hobbies and pastimes fall by the wayside due to mobility issues, and there is a tangible sense of the road not taken.
A kinder, gentler me
Now, I appreciate efforts more than the finished product and have learned to not push myself and others, to be satisfied with less — basically a balance of productivity and perfectionism. The way I approach things has evolved — I have learned to temper the inclination to perfectionism.
Practically speaking, I am more inclined to seize the day, especially when disease activity is low. I try not to hoard my limited resources of time, energy and well being, especially time. To me that means not putting off the things I want to do, be it a fun experience like coffee with a friend or a day trip to the seaside, or a mundane trip to the grocery store. If I can do it, why not? It’s not like resting today is going to prevent a flare tomorrow — that will come anyway. This way, I find I am less regretful, less wistful and more ‘can do’.
In the past, like the boy in Robert Lowell’s poem Waking Early Sunday Morning, I sat “like a dragon on time’s hoard before the day’s begun.” Now, I am inclined to use my good times because how I feel tomorrow is anybody’s guess.
I wouldn’t use the word stronger to describe my transformation; in fact, I would use the word softer. Society encourages and respects strength for the most part, but I think that softness is underappreciated. Softness and the capacity to give more is what makes the world go around.
Living with RA has been an eye opening journey of learning about the condition, the way I am affected by the treatment and how I can be functional through it all. All treatments don’t work for everyone — so assuming the treatments are actually effective for you — there is still the question of side effects. Some drugs may have more side effects like liver damage, on you than others.
And they certainly don’t cure the condition — it is a tightrope of managing the disease and the side effects of the treatments. Enough medications to prevent the deformities that can distort joints while bloodwork monitors the damage inflicted by the powerful drugs. The new reality is that nothing is guaranteed.
My perspective on life has grown and deepened as a direct result of my condition. I see the world differently — it’s almost like the song “I can see clearly now the rain is gone, I can see all obstacles in my way…” The question is only how to navigate the new reality of limited energy, painful flares, susceptibility to more infections due to immunosuppressive drugs, and uncertainty of how long a new drug will work.
I understand that good health is so fundamental to our outlook on life, that we don’t realize it until we are experiencing poor health. One cannot shoulder through the pain, the flares, the fatigue of autoimmune diseases — certainly, people have tried. And it makes us grumpy, bad tempered and dissatisfied with life.
Coming to terms with autoimmune disease is recognizing that one is ill, that the illness will flare and subside with no warning, and that it is often not the kind of illness that you can overcome. It is something to deal with, to manage, to work around, and to go one step further, to be happy and content despite it. Having a positive outlook and being kinder makes us happier even when we have to work at it.
Aeschylus, an ancient Greek writer of tragedies, was right. “Happiness is a choice that requires effort at times.”
