Life is what happens while you are busy making other plans.- John Lennon
No one ever plans for a chronic illness, writing down “develop rheumatoid arthritis” complete with hearts enthusiastically dotting the I’s on their list of things to accomplish in life. We plan for education, finding love, having kids, learning to speak a second language or play the guitar and mastering the art of perfect cinnamon toast. But medication, pain and fatigue? Definitely not on the short list.
And then it happens anyway and it feels as if your life has been hijacked and nothing is ever the same again. RA affects every aspect of your life, what you feel like when you wake up, the clothes you wear, the job you do and how - or if - you cut vegetables for dinner. It feels as if RA has you in its teeth, never letting go and as you grieve the loss of your healthy self, you wonder what will happen to the life you’d planned - must you grieve the loss of that, as well?
When I was younger, during the moments of being deep in despair about the unfairness of what RA did to my life, a despair often tinged with rage, after listening to me rant, my father would ask “who promised you life would be fair?” It was a trigger for me, a way to elicit a rueful smile and a joking mention that I distinctly remembered a fairy godmother saying words to that effect. There’s nothing like a bit of reality to deflate a good tantrum.
These words my father said were a way to get me out of the depths, a way to nudge my sense of humor, but also a way to nudge my reason. Because he was right. No one ever promised us that life would be fair. We like to pretend so, disappearing into a fairy tale of living happily ever after, having perfect health into old age, stability in work, children who never act out and getting everything we deserve. And when the bubble of illusion bursts, we react as if a fairy godmother had indeed stood over our crib, cooing into our drooling infant faces and waving a magic wand, promising us a smooth ride. We stomp our feet and hiss that it isn’t fair - metaphorically, if not literally, as stomping your feet might hurt when you have RA - we wonder what we did to deserve this, trying to link a cause-and-effect to make it easier to understand. But the truth is this: RA is not a punishment for misdeeds, it just is. There is no reason beyond a malfunctioning autoimmune system and as for that fairy godmother? She was never there.
There is one constant in life, one thing that you can count on: change. Some changes are initiated by you, others are thrust upon you through what happens to the people you love, to your employer, to a stranger, to a cell within your body. Some changes you control, others will throw your life into turmoil. What matters is how you adapt.
The ability to adapt to changes in circumstances is one of the defining characteristic of human beings. We adapt in little ways every day and in big ways over the years and will adapt to sharing our lives with a chronic illness, too, each of us in different ways. The trick is to believe that you can, to know that you have the strength and ability to bounce back and unless you have lived in a bubble all your life, catered to by an army of groveling minions, you do know. You have adapted to a shift in responsibilities as you grew older, you have learned to take care of yourself when you moved out of your parents’ house, you’ve had your heart broken and lived to love again, learned to live with seasonal allergies, compromised in relationships with friends and family and remember to step around that table where you stubbed your toe last Christmas.
Everything that has happened in your life before this moment has taught you how to cope with change, how to bend without breaking and how to get out on the other side of grief. Plans have changed before and will again in the future, sometimes because of RA and sometimes because of something entirely different and deep inside you, hidden under the anger and sadness, that’s a part of you who knows. Knows that although you’d never imagined your life would look like this, you’ll make something of it anyway.
Change happens. And you make a new plan.
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You can read more of Lene’s writing at The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.