It is known that there are 5 stages of grief when coming to terms with any kind of loss. These stages of grief are most commonly associated with bereavement but can also be applied to coming to terms with a chronic illness.
This model was created by the Swiss-American psychiatrist Elisabeth Kübler-Ross during her work with terminally ill patients. However, what is important to note is that this model is not designed to be strictly linear, but more a personal journey. She identified that not all people will go through all these stages of grief, and may even miss some stages out.
As I wrote in my first post “my story”, I explained how I used to take my energy levels for granted.
I used to not think anything of going for a walk either in the countryside or down to town and back (a mile and a half each way). I used to have MORE energy when E was newborn, sleepless nights and all. That all changed last autumn.
Once over the shock (and relief quite frankly) of being diagnosed with M.E., of finally getting a “name” for the variety of symptoms filling my daily life, the stages of grief started. No matter how much I denied how nothing had changed, life was all wonderful and glory in the future, I had to come to terms with it and get my head around what was happening and what it meant for our family life.
Shock / Denial
I remember this stage far too vividly. Naively, I said I was hopeful for the future, that nothing had changed, and that life was going to continue as normal. People in the “denial” stage of grief will not allow themselves to admit they have anything wrong. They typically will not follow a treatment programme, nor follow medical advice. Not only will they deny to themselves that anything is wrong, they will deny to friends and family the same thing.
Well my denial period didn’t work. Funny that. I was gradually losing my mobility because I was pushing myself too far, beyond my reasonable limits. I was continuing to get regular infections, I seemed to be a walking illness. What I was used to doing was slowly but surely disappearing from my very eyes. Unless I took hold of the condition, I wasn’t going to get anywhere. Literally and metaphorically.
This is the “it’s not fair” stage. Anger is directed at both the doctors who diagnosed you and at those who don’t have the condition themselves. Anger is a totally normal emotion but we’re taught in society to suppress it. Instead, why don’t we learn how to process it in an appropriate manner? Anyway, that’s another blog post to come, I could talk for hours about that…
I get regular days where anger rears its head. My poor husband bears the brunt of this, and more often than not, this anger ends in tears (mine not his). The anger phase in the early stages of M.E. was ugly anger. Proper ugly tears. Proper “what exactly have I done to deserve this” type anger. Pretty much every swear word there is, was used on a regular basis by me.
I go to therapy weekly and have been going to see the same lady for 3 years. Amazingly, she knows me better than I know myself.
After my diagnosis, she spent weeks just listening to me swear, punch the air, and just generally get it all out. She was praising me for this, for processing the anger and not internalising it. It felt bloody brilliant strangely!
This is the bit where you promise to do whatever it takes, just to get rid of the illness. Bargaining tends to happen at the same time as guilt. The feeling of “if only…”.
If only I’d slowed down earlier, or I’d listened to my body, or I’d looked after myself a bit better.
Saying all these things don’t actually achieve anything. They simply make it harder to get to the acceptance stage. In the bargaining stage we focus on our negative traits, or our own personal faults.
I spent the bargaining phase analysing every decision I’d ever made, every movement I’d ever done, how I’d conducted myself through various situations.
Rather unnecessarily, I was trying to work out what I’d done so wrong to cause all this. I was trying to tell myself that if I could just go back and reverse certain decisions that the M.E. would all just disappear.
I’m convinced that a number of (well-meaning) friends and family are at this stage when trying to help me. Instead of allowing me to be ill, they want me to try out various supposed “treatment” options. It’s not that I don’t want to “be better”, obviously it would be wonderful to be illness-free but I’ve lived with various chronic illnesses other than M.E. for years. If there would have been a complete reversal of any of these, you would have thought I’d know about it by now.
I’ve spent too many years in a depressive state. A state of numbness. Where you’ve run out of tears. There is just no feeling.
Depression doesn’t ever make sense to someone looking in, but for the person suffering, it’s very, very real. In a depressive state you withdraw from life, there is no enjoyment or fulfilment in anything, you feel numb. You may sleep more than normal or not at all.
Luckily for me in coming to terms with M.E. I didn’t spend time in the depressive state. I somehow managed to fight it off. I’m not in any way suggesting that one can “snap out of it” but I think the fact that I’ve spent so many years in therapy and have finally, finally found a dose of anti-depressants that work for me, managed to help me avoid this state.
I truly believe that acceptance is given this elusive, diamond-encrusted, golden throne style status. That somehow once you get to the “acceptance” stage that’s it. You’re sorted. Unfortunately, it isn’t that simple. You get to an acceptance stage but that’s not to say you don’t go back into the anger stage, or the denial stage, or the depression stage.
The way I view acceptance is that it’s not a case of giving in, or even loving every moment of life with chronic illness, but saying to yourself that this is it now. Coming to terms with it. This is the way it’s going to be for a while and that’s ok.
I now give M.E. space in my life rather than trying to fight it away constantly. This makes it a part of me. When explaining it to others, I say that my M.E. is a friend on my shoulder (a pretty dreadful one) but one that isn’t going anywhere.
Controlling whether I have M.E. or not is not possible, but learning to manage it is. I can learn to manage the symptoms, and create a life for myself, which obviously impacts hubby and E, in a way that is peaceful for all of us.
Friends and family mostly allow me to be at this acceptance stage but there are people who aren’t there with me and this is what angers me most. There are people who assume I must still be at the bargaining stage and so desperate to “get better” but nothing could be further from the truth.
I am at peace with myself and my illnesses and that’s ok. I’d like people to respect that that’s where I am at the moment, but also respect the fact that other people with chronic illnesses might be at different stages, and that’s ok too.
Until next time,
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