Apparently, people being told they have a chronic illness often go through the five stages of grief which are more commonly spoken of in relation to bereavement. I was talking to The Husband today about my attitudes to my colitis, and as he does, he opened his mouth and said something completely relevant without meaning to, about how I had progressed through the phases of grief. I wasn’t sure this would apply to chronic illnesses, so I looked it up on that fount of all wisdom – the interweb. I found it on a website, so it must be true. Actually I found it on many websites, and some of them were quite helpful.
The stages vary, depending on who is writing about them, but the list I found which resonated with me is:
Bargaining (or guilt)
I wish I had known about this, not only when I was diagnosed with ulcerative colitis, but also when I realised that I suffer from depression, probably always will, and will never be able to live a functional life long-term without medication.
I’ve got to the acceptance stage with the depression, fairly recently, although I’m still trying to recover from some of the trauma and disruption that I experienced when I tried to come off the antidepressants last summer. But the acceptance stage with the colitis has just started to be possible.
My colitis is not getting better. In fact it’s getting slowly but steadily worse, regardless of anything I do. I have to caveat that by saying, so far. There are many more medical solutions that can be tried. There are many people with ulcerative colitis who go into remission for years on end. But as a result of this downward trend, over the last year or so, after the numbness and relief at being diagnosed wore off, I’ve gone through all of these phases.
Denial. It’s just a bit of blood. I feel a bit sick now and again, but doesn’t everyone? It doesn’t stop me from working, I get a bit tired now and then, but I have three children and a full time job – doesn’t everyone get tired? And I suffer from depression, of course I get tired. I’m just panicking over nothing. I’m making a big fuss about nothing.
But I wasn’t. The reactions of the specialists and the IBD nurses (bless them, btw, they are totally wonderful) clearly show that.
Anger. This manifests as anger with myself. It’s my lifestyle, my diet, my weight, my lack of fitness, I’m just too lazy to do the things I’m supposed to do, so I’ve got colitis. Sometimes it’s anger with the NHS – if they could only get hold of the right treatment, get me seen more often by the specialists, explain things better, somehow the colitis wouldn’t be so bad. And sometimes it’s just anger with life – I’m only 44 for God’s sake. This should not be happening to me. It’s not fair.
No – it isn’t fair. But it’s not my fault, it’s not the fault of the NHS, and far worse things happen to other people for no apparent reason.
Guilt. I’ll do away with the bargaining, because my Jewish Mother side does guilt so very well that everything else fades into the background:-) I do feel guilty – that comes after the anger with myself, or before it, or just with it sometimes. I feel guilty that I’m being a burden to my family, who have to put up with my exhaustion and my bad moods. I feel guilty that I don’t have the energy to do more exercise and more housework. I feel guilty that I don’t have the willpower to stick to the right kind of diet to help (even though there’s no evidence that weight or diet affects the disease at all). I even feel guilty because I’m not responding to the meds, despite using all of them meticulously.
But I can’t magic up energy out of nowhere, and I can’t do any more than I currently do in sticking with the medication and letting the NHS know when the meds aren’t working. And it’s very hard to stick to a low carb diet when the only thing (and I mean truly the only thing) that lessens the feelings of nausea, is bread.
Depression/Anxiety. Yep, I feel both of those. I’m used to them both though, so I can tell when the depression I’m feeling is actually an extended low mood because of the knowledge that the colitis will be with me for the rest of my life. It has a cause, and therefore can be more easily dealt with. I have been extremely anxious on and off lately, and not really understood why – I just didn’t make the connection. Now that I have, it’ll be interesting to see whether my anxiety attacks can be more easily dealt with as well. The kind of person I am means that understanding can take me a long way down the healing process.
Acceptance. I’m struggling with this one at the moment – but I’ve made the conscious decision to strive for it. What tends to happen is that I have a period when I feel all of the above in a more or less random order, and generally give myself a hard time. When I remember that it’s not my fault, I’m doing all I can to address it, and the effects are real and significant (I’m not just ‘making a fuss’), then my mood lifts immensely. Then, I have the energy to deal with my actual symptoms, treat myself gently, and generally improve the quality of life of everyone around me.
I guess the morals of this blog post are, firstly, whatever your health or emotional problem happens to be, whether it’s chronic illness, chronic pain, bereavement, divorce, all of the guilt, anger, anxiety and denial is perfectly normal – and acceptance will come. Secondly, knowing that these stages are normal, may help – it certainly is helping me right now. And thirdly – be gentle with yourself. Not only is that the right thing to do, but it’s a pragmatic way to utilize your energy most efficiently at a time when your energy reserves might well be depleted. So if you can’t be gentle with yourself for yourself, because you truly belief you deserve it (which you do), do it because it makes sense, do it for the people around you.