I was asked a question recently by a newly diagnosed young lady in her early twenties. She wanted to know how to find a way of living with RA – she was already in a lot of pain and her RA was quite severe which had her worried about her future. I was really touched that she felt able to ask me, and I was pondering what to say when it hit me – how blessed was I that RA didn’t raise its head until I was in my forties! I can’t even imagine how horrid it would have been to have found myself in these shoes at a younger age, when you’re still finding out who you are, what you think and where you want to be (Not saying I have those down now, but I worry about them much less!).
My initial thoughts were around Acceptance, as it’s been the key for me in finding a way to live alongside my illness. But how do you explain that to someone young and newly diagnosed? Someone who is upset, scared, angry and confused. “Just accept it, you’ll be fine” is not going to cut the mustard. So this is a much longer (and more edited) version of my reply to her, which I really hope might help not just the young and newly diagnosed but the older (!) ones amongst us finding chronic life the emotional as well as physical rollercoaster it often is. So, Acceptance.
Where to start? Meaning? Let’s give this some context. Chambers English says to accept in this sense is to tolerate, to take on board. Not exactly cheering words. I know people often see acceptance as giving in or giving up, and it’s certainly not that for me. Acceptance doesn’t mean stopping researching treatment options, chasing doctors or not eating healthily. Let me digress for a moment – often in chronic life Elisabeth Kubler-Ross’ seven stages of grief are referred to. Originally published in her book ‘On Death and Dying’ it was soon realised that it’s a really useful tool for understanding grief in any form, including grief for what and who we were after significant life changes. Diagnosis with a chronic condition certainly fits into that category. It helps us validate what we’re feeling as well as letting us know we’re not crazy, and we’re not alone.
The stages are usually described as Shock or Disbelief, Denial, Anger, Bargaining, Guilt, Depression and Acceptance. You can see a good explanation of those stages here, but I will just note that these are not linear, it’s common to jump back and forth between all of them, we process these in our own time. So whilst Acceptance is listed last, it doesn’t mean you have to cycle through the others first, although in all honesty it’s likely you will. It’s perfectly possible to go from depression to anger to bargaining and back to anger again, and it’s likely you’ll do it more than once. And that’s absolutely fine; there is no “right way” to grieve. Be kind to yourself, this is a lot to deal with.
It’s often a long road and I certainly didn’t get here overnight. Believe me I’ve ranted, railed, been depressed, had severe anxiety attacks, not wanted to go on, screamed why me – the whole box of tricks. I’m sure this shows in my earlier blogs! Acceptance is a tough thing to do with a chronic illness, but it’s such an important step, as it can bring us to a place of peace with our illness. Anger in particular is very wearing to carry daily, and hurts us emotionally.
You’ll need to find your own path to peace, no-one can do it for you. For me it’s been psychotherapy, leading to meditation and spirituality, alongside antidepressants and some great support from friends. For others it’s religion, counselling, psychology, support groups, medication, and sometimes just having a good scream! All of these are great tools. But I promise you too can make your peace with this.
Acceptance – to tolerate? So, eventually I’m back on track! Toleration suggests a kind of grudging version of putting up with, like your illness is an albatross around your neck. For me it’s much more profound and much simpler. Acceptance means non judgement. It means I stop attaching emotions to my illness. I accept it just is. Like a table or a chair, it exists, but I don’t have to feel anything about it. It’s not evil or bad or personal, and it’s not something I need to fight with or be angry at. Who has the energy for that?! Using mindfulness has made me much more aware of what I’m thinking, and if I find my thoughts are drifting towards anger or guilt I just return to my breath, and I remind myself they’re simply not helpful.
Acceptance takes work, it takes practice. It’s not easy, it means changing the way we think. Of course chronic illness has had a massive impact on my life, there are many things I’ve lost, so it’s important we choose where we focus. I’m fortunate; there are also so many things I’ve gained, including a fabulous support community across social media. I choose daily to focus on the good.
We all know things will change, chronic life throws us new symptoms and challenges frequently and I’ve found that if I try to accept and roll with these rather than fight them my life becomes calmer. Does it work every hour of every day? Nope, I still have anxiety triggers and a recent new diagnosis had me reeling for a few days. But previously that would have sent me down the rabbit hole for weeks if not months, so I call that a win.
Life is precious and there are no guarantees for anyone, so certainly for me the best thing to do is enjoy every moment. Really enjoy it. Even on the worst of days we have choices about what we focus on and how we think. So on my less easy days I’m really grateful that friends drop shopping off and I have a warm bed. On better days just sitting outside and feeling the sun on my face or the breeze on my skin reminds me I’m alive, and I make a conscious choice to be happy.