You may or may not be familiar with the stages of grief model that is often referenced by counsellors and popular culture. There are a few versions of this (including a very funny Game of Thrones version) but the most cited one features five stages. These are: Denial, Anger, Bargaining, Depression & Acceptance. You may not think to apply this sort of thinking to your chronic illness journey, but I assure you that it is incredibly relevant. I’ve adapted it slightly to fit the struggle with illness and it’s something that I will refer to throughout the book. See if you recognise yourself in any of these examples:
Omg! I’ve been (finally) diagnosed with something! Crap…I have no idea what to do/say/think. Everyone is asking me how I feel and I have no bloody idea. How am I supposed to feel?! I’ve never done this before!
I don’t accept this. It can’t be happening. They’ve got it wrong. Bloody doctors! There’s nothing wrong with me, I’m just tired/hungry/low in potassium/the moon is in Jupiter’s orbit and it’s thrown my third chakra out of whack etc.
This isn’t fucking fair! How the bollocking buggery am I supposed to cope with this? Piss off with your stupid advice, you have no idea how I feel! Oh yeah, I’m sure you have loads of problems with your perfect life and healthy body—fuck you! Back away from me nice and slowly and you might leave with all your fingers intact.
I miss me. I miss the old me, the healthy me, the better me. I hate this new person-I don’t understand how to live this way. I want to go back to my old life when things didn’t hurt and having a shower didn’t cause me to lay down for half an hour because I’m so bloody tired!
If I have a healthy diet and get exactly eight hours of sleep a night then I won’t get ill. I won’t take these medications that the doctor has prescribed me because I hate the side effects but it’s ok because I didn’t take them yesterday and I felt alright then.
I have a chronic illness. I’m aware of my limitations most of the time. But it still gets me down. I guess acceptance doesn’t always mean that I’ll feel ok with it.
I don’t feel overly well and that’s ok. I’m going to go home, lay on the sofa and watch back-to-back Disney films whilst consuming an entire tub of Ben & Jerry’s Chunky Monkey ice cream. I’m not going to do the dishes because I don’t have the energy for that today and that’s ok. Maybe tomorrow will be a better day.
Sound familiar? It’s important to note that these stages aren’t linear. You don’t start at 1 and end up at 7. You dip in and out of each stage, sometimes on an hourly basis. It’s also quite possible that you only recognise yourself in some of the stages. I know that anger is a stage I fall back on A LOT when I fall out of kilter (my poor fiancé!) but bargaining is something that I don’t tend to do very often. I’m getting better at self-soothing, but loss is the most painful for me. That’s because chronic illness is a form of bereavement.
Today might be a good ‘acceptance’ type day. You might have embraced your inner chronic illness warrior and be living within your limitations. You might have embraced honest and difficult conversations with your friends to the tune of: “I don’t think going to see a late-night film is going to work for me tonight. I have to be up early in the morning and I need to charge my batteries for the day ahead. I’d love to have coffee at lunch time though.” Wow. Get you, you little star. You’re firing on all cylinders and protecting yourself in the bargain. However, like all emotional states, each one of the stages are transient. They don’t last. They can’t. The pendulum of life will inevitably swing between the stages and the best that you can hope for is that you don’t get whiplash in the process. The key thing to remember is to not get stuck in one stage for too long, even the so-called positive stages. Self-soothing is fantastic; it helps you to be your own comforting parent whilst you’re giving yourself permission to simply ‘be’. However, stay in self-soothing mode for too long and you’ll fester on the sofa consuming Tesco’s supply of Dairy Milk whilst crying and singing ‘Under the Sea’ through rotten teeth. There must be a time when you re-embrace your semblance of normal and challenge yourself to achieve new things. These may lead to failure; this may lead to feeling angry or a sense of loss as you are unable to do what you used to be able to. And then you might need to self-soothe until you’re ready to re-join the world. And thus the cycle starts again. But RECOGNISING each stage and being kind to yourself is at the epicentre of successfully living with a chronic illness.
Well, don’t I sound like I’ve got my shit together! Here’s me giving out this advice, sounding like I’m the big ‘I am’ of the chronic illness world. If you’re having a crap day, I must sound like the ‘Positive Peter’ of the previous blog and, for that, I apologise. I’m afraid the only way that I can give you this advice is because I have well and truly festered in each and every stage and watched my life surreptitiously crumbling around my feet. I have cuddled up in a blanket of loss and refused to come out. I have spent months breathing fire and pushing everyone away in a flaming inferno of anger. And my months of denial have resulted in some very hairy and life-threatening admissions to hospital as I have pushed myself to the limit of what my body is able to do. None of this was fun and none of it was healthy. Life with a chronic illness is a massive learning curve of emotional shit on top of the physical shit that plagues us every day, and there are huge peaks and troughs along the way. Sometimes, just saying: “I’m having an angry moment and I need to be left alone. I don’t want to say anything that I don’t mean so I’m going to take myself away and deal with it” is enough for you and your loved ones to recognise your emotional stage and act accordingly. It sounds disgustingly simple, doesn’t it? The truth is, having the same self-awareness of your emotional states as you do to your physical states is simple. It’s just not easy. Start by showing your loved ones/friends/significant other/siblings the 7 emotional states. Explain if one particular stage rings true for you and what that might look like. And then, when you find yourself in the grips of one, you should be able to say ‘I’m struggling with denial/bargaining etc today’ and, hopefully, that should be enough to explain your actions and deal with the fallout a bit better. It’ll never be easy, but the goal is to prevent a Hiroshima- style mushroom shit cloud from hitting your family and engulfing your life. Small steps you wonderful warriors. Small but steady.