Acceptance and RA: Tangled Up in the If Onlys

Patient Expert

What would you wish for if there were no limits? What would you do if you found an old lamp at the flea market and it was the one with the genie in it?

I was watching Tangled this weekend, the Disney reinvention of the Rapunzel story and my brain caught at the idea of a flower made of a drop of sunshine that could heal illnesses and keep an old woman young for hundreds of years. It's a fairytale, this idea of being cured, of the damage of years and the ravages of disease being reversed and yet sometimes it isn't. Because a few weeks ago I read about a 14-month-old little girl who got a cochlear implant and could hear for the first time in her short life and it made me wonder. Wonder what I would do if I didn't have RA. If I could walk.

I'm good with the way my life is, content even though it is smaller and has more pain in it than anything I ever imagined could make me happy. I am satisfied, at peace, genuinely happy. And then I started thinking about what I would do if only...

At first I didn't know, was so used to not opening that door, to living only within what is possible now that I couldn't think of more than wanting to ride a horse again. And then the floodgates opened and one after the other, the dreams tumbled out. Dreams of walking through the woods photographing snow in the low winter sunshine, of taking that road trip I used to dream about, the one where I hop in a car and go where I want for weeks or maybe months. Of visiting my niece and nephew, of riding a bike, writing without being aware that I have to stop after an hour or I'll pay for it, of knitting again, of making my own dinner and of using the bathroom without help.

And the more the wishes piled up, the more depressed I became and the more I longed for a different life. What had started out as an intellectual exercise took over my mind and my soul, as insatiable as a hungry beast, always wanting more. It started with if only I had less pain, became if only I didn't use a wheelchair, moved on to if only I could walk and then if only I didn't have RA and that way lies madness.

Acceptance. It's a word we hear often, those of us who live with chronic illness. It's the goal of the grieving process, the state that enables us to move on with our lives, to leave behind the desperate railing against the diagnosis, the pain and the loss and start living again, happy - or mostly happy - just the way we are.

Easier said than done.

The dictionary defines acceptance as the act of taking or receiving that which is offered. That's fine when somebody buys you a really nice gift, but when you're looking at sharing the rest of your life with rheumatoid arthritis, receiving it with anything resembling equanimity is beyond difficult. But you have to, because without acceptance, you get lost. Lost in anger and depression and you cannot spend the rest of your life tangled up in the deep woods of regret.

Michael J Fox lives with Parkinson's disease and once said that "[m]y happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations" (Esquire, January 2007). And that is it, exactly. Managing your expectations, keeping them within the realm of what is possible is key to acceptance. And acceptance, once reached, must be carefully nourished and guarded for it is a fluid state of being, one that can be influenced and blackened by the what ifs and the if onlys. If you open the door to the things you cannot have, the dreams you've left behind, you begin to love your life less, to wish for that which can only be granted by a fairy godmother with a magic wand.

It's easy to get stuck in believing that RA is all that stops you, the only reason you cannot do this, that and the other thing. And although that may be true if you wanted to become a trapeze artist, mostly it's a scapegoat that keeps you from dreaming new dreams, from finding joy in your life as it is. Everyone has limits, whether they live with a chronic illness or not and the trick to finding happiness is to make the best of the life you have. Continue dreaming, continue pushing the envelope of what you want and what you do, of shooting for the stars. Go forward, not back. That is where you will find your happiness, not in the mirage of the if onlys.

Lene is the author of the award-winning blog The Seated View.