The Five Stages of Grief
Being married to a man who has studied counselling I was made aware of what have become known as the five stages of grief.
These were first identified by Elizabeth Kubler-Ross in a book that dealt with terminal patients and how they coped. They are now used by many to explain coping mechanisms unassociated with dying. For instance I have known a vicar to use them to explain the feelings parents go through after their child has just got married and left home.
"So what has this to do with diabetes?" you may be wondering. Well if you forget the word 'grief' and replace it with the word 'loss' you may get a better idea of where I am going. It cannot be denied that as a diabetic you have 'lost' something.
Now I have known both health professionals and some diabetics themselves twitch about the above statement. They seem to feel that one is being negative by thinking in that fashion and say "You should adopt a positive attitude and concentrate on what you have gained".
You have a disease that requires a total lifestyle change, often with an associated 'giving up' of many things that before you deemed made life worth living and you are supposed to just forget all that?
I am not saying that one should not concentrate on the positive but I am saying we are all human and unless you are Pollyanna or a Saint you are going to experience feelings of loss and the negative emotions associated with this.
Now let us look at them one by one with a view towards diabetes.
We all tend to sail through life thinking "That won't happen to me"( except for the dedicated pessimist that is, who is convinced everything bad will happen to them!).
This is quite natural. I mean, if you felt you were going to catch every disease out there you would be a gibbering wreck.
So when you discover that it has 'happened to you' there are often feelings of shock and total disbelief. The feeling of 'Not me, there must have been some mistake, this cannot be me they are talking about' or 'The lab must have got my results mixed with someone else's' are fairly common.
The mind is a strange creature. People have told me that when initially diagnosed they found themselves wanting to sleep all the time, possible to hide from the situation or because then they could somehow convince themselves this was all a dream from which they would awaken.
For most people this phase passes fairly quickly but for some it is more serious.
These are the folk who are just unable to deal with the whole concept of having a chronic illness. They cannot accept that their body has let them down in this way, either totally denying that they have a problem or at best feeling it is only a 'touch of diabetes' requiring no lifestyle changes on their part.
This is the type of denial that can be truly dangerous. Someone locked in this phase will refuse to do anything towards caring for their diabetes, either by medication, diet or exercise and the disease can only progress.
Now before you start thinking that these folk are total idiots who need a firm kick where it hurts, try seeing it from their perspective. Consider why they would take such a stand.
Fear can play a very large part in denial. Most people in serious denial are not fools. They have listened to what they have been told re their disease and it is in fact this very knowledge that has led to their attitude of denial. They are afraid of all the difficulties they perceive in their future - the endless day to day control, the loss of their old lifestyle, the loss of their independence etc, etc. By denying that they have the disease they do not have to cope with all of these.
Being an ostrich with ones head in the sand is not exactly an uncommon coping mechanism, we are all guilty of doing this at one time or another in our lives so, if you know one of these people, try for a little understanding.
Then there is, strange though it may seem to many, sometimes a sense of shame attached to having a chronic illness.
For instance this can be a problem in what is termed the 'macho' male. Suddenly he has been 'reduced' in his own eyes and by denying the very existence of his disease he can hide what he sees as a defect from both the world and himself.
Consider being out for a night with the boys watching the big game and putting back large quantities of....well, water! It takes a brave man!!
This attitude is by no means restricted to the male sex. There are some normally hard headed business women out there who say that they felt the diagnoses of type 2 diabetes, (cited as more prevalent in women than men) meant that they were somehow inferior and made them ashamed to admit to having the disease - the result? Denial!
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This can range from frustration to full blown rage. One cannot really be blamed for being frustrated by the daily challenge of living with diabetes, however it is when this spills over into intense anger that problems occur.
I have received letters where the anger fairly flames off the page. The main theme behind most of these is "Why me? What have I done to deserve this? It is so unfair!"
And believe me I totally agree, I also think it is dashed unfair! However, trite though it may sound to say it, life is not fair.
I wish I had the answer to the "why me" question. After all, I have asked it often enough myself, but the only conclusion I have been able to come to is - Life's like that, adapt or die. Not what someone in a full blown rage wants to hear and certainly unlikely to pacify them!
Then there are those folk, of whatever religion they subscribe to, be it Christian, Muslim, Judaism or any other, who are really angry because they feel that somehow their God has forsaken them because they have now developed diabetes.
They tell me that they have always been regular church goers, pray every day, follow the tenet of their religion to the letter and yet now this has happened. Why has it not happened to Sally down the street who never goes to church and has been known to have men friends visiting while hubby is at work?
I am afraid that in this instance I have no answer. At the cost of sounding irreverent I think that if I did have the answer you would be worshipping me!
Who does know why bad stuff happens to good people? Why does a couple lose a desperately wanted baby, why does that happy, healthy young girl suddenly develop leukaemia, why was that good man's whole family wiped out in a motor accident? - the list could go on and on.
I am no theologian but from my limited knowledge I cannot remember any religious text that states categorically that life is going to be an endless bed of roses with no thorns attached, though I will admit that there are folk who err on the side of "If you are good nice things will happen".
So if you want to get angry with God and rant and rage at him feel free to do so, I am sure he has broad shoulders and can take it.
Just do not make the mistake of throwing the baby out with the bath water. If up to the point of diagnosis you have taken comfort in your religion then I suggest that before you decide that it is no longer for you because "God is picking on me" you talk to your spiritual advisor, who is best able to cope with your confusion.
One of the main problems with anger is that it is seldom kept to oneself. We tend to want to take it out on someone or something.
Now that is okay if you pound your pillow and hurl it at the wall but not so great if you kick the cat or lash out, even verbally, at someone dear to you. And it is so often the ones closest and dearest to us that get the backlash of our anger.
This can be for a number of reasons. They are usually around us more and are, so to speak, in the right place at the wrong time. Also we feel safer with them, we do not have to put up a front and so are comfortable about letting our feelings show.
Good for us, not so great for them! Then they may be trying to help us by making suggestions that we, in the mindset in which we are operating, resent and thus we focus our anger on them.
We need to remember that they may well be feeling as helpless and confused as we are. Generally any changes in the lifestyle of one person has ripples throughout the family.
And I should know - anger, along with feeling sorry for myself, is one of my own less loveable traits!
My husband has become adept at dealing with me. How he does this changes from day to day. Sometimes he just listens to my rants, sometimes he reasons with me (this can work but often makes me want to scream) and at other times he goes the 'tough love' approach and points out a few home truths, like "You have diabetes, there is nothing you can do to change it, now decide what you want to do. If you want to control it, fine. If you want to forget all that and go back to your old life, fine. Just make up your mind and then be prepared to live with the consequences of whichever action you choose without whining about it".
I have tried the "But what about you, what do you want me to do. How will you cope if I get complications" form of emotional blackmail, probably subconsciously hoping he will somehow make it all right but he very sensibly, and dashed frustratingly, comes back at me with "Forget about me, this is your life, your decision".
At the end of this I am usually so angry I want to kill, but I also have something else to vent my frustration on besides my diabetes and I end up back on the straight and narrow.
You will notice he is a long suffering man.
Real full blown anger is a difficult problem to deal with and can destroy relationships. Some people seem to enjoy wallowing in their anger, hugging it to them like a security blanket. Others may be well aware of their problem but seem totally unable to do anything about it. Both these need to seek professional help as fast as possible but getting the former to admit that may be difficult.
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The dictionary definition of bargaining is 'an agreement made between people as to what one will do for the other'. In diabetic bargaining it is rather more one sided. You bargain with yourself. You may feel you are bargaining with the disease but as the disease is part of you, you are, by definition, bargaining with yourself - and generally, I might add, with your health.
This sort of behaviour goes something like this " I'll only eat lettuce for breakfast and lunch then maybe I can have a pizza for dinner" or "If I walk for an extra 10 minutes maybe it will be okay if I eat this cake".
Then there is the more direct bargaining i.e. "Okay you dashed disease, we all need time off sometimes so I'll be good and give you all the right foods and exercise you want for now if you will allow me to eat what I want over the Christmas holiday".
This may actually work some of the time. A type 1 can take extra insulin to cover a high carb snack or a type 2 can walk the extra mile to do likewise but this is really not a good idea. It can throw your whole control out of balance and your blood glucose start going up and down like a yo-yo.
Unfortunately there is no room for bargaining with diabetes - it wins hands down every time.
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Frankly I doubt very much if there is any diabetic out there who has not experienced some form of depression at one time or another.
And before you begin knocking yourself (or someone you know) for being depressed, consider the facts - you are unable to eat your favourite foods and the diet is tedious in the extreme, you have to do all that dashed exercise that you generally have been avoiding like the plague because it is NOT your favourite way of passing the day, you have to remember to take daily medication and when you do all those painful daily tests to check that the above mentioned hard work has paid off, you frequently finds it hasn't!!! - if you did NOT feel depressed I would be seriously worried, unless you had had a frontal lobotomy that is!
Statistic even will bear me out, for they state that diabetics are twice as likely to be diagnosed with depression than any other sector of the population. This was borne out by research done over a 25 year period at Washington University in St. Louis, USA.
Some people are fortunate in that they never go beyond what I will call the 'sadness' stage. They may miss the person they were before and feel weepy and helpless at times.
Unsympathetic people have been heard to comment that they are 'feeling sorry for themselves'. Damn right they are, and why ever not? Given the proper sympathy and an understanding, listening ear, these folk may never go beyond this stage and in fact may get over it fairly quickly, at least until something else comes round to stir the feelings up again.
However, depression an be much more serious. Sometimes the whole thing just becomes to much. The awareness of ones inability to change ones situation can fall on one like a ton of bricks and lead to feelings of utter hopelessness.
People react to this is different ways. Some withdraw into themselves, trying to shut out the real world and thus their disease. Others get to the stage of saying "Why bother" and just give up. Then there are the folk who react to their depression by binge eating or by doing as little physical activity as possible, often refusing to even get out of bed.
If one considers that another study came to the conclusion that depression in diabetics caused a greater risk for heart disease than did high blood sugar we can see how important it is to recognise it and get treatment.
I will not go into the warning signs or symptoms of depression here. If you want to know more then I suggest you go to Complications, where I have dealt with those aspects more fully.
Getting some sort of help for serious depression is imperative.
Considering that it has probably been brought on by our inability to cope with all the stuff diabetes has heaped on our plate and the fact that, however much we might wish it, said diabetes is not going to go away, we need some help to get back on track. Though it may not seem like it at the time there are methods out there to treat this state.
One must also remember that being depressed is nothing to be ashamed of. You are not 'nuts' or weak willed or at fault in any way. You have just been asked to carry a load too heavy for you and you need help in, so to speak, building up your 'muscles' so you can carry it more easily.
If you are afraid of getting even more drugs to add to your 'pill overload' then be comforted. Though anti-depressants are often the first choice of the medical profession (after all it is quick and easy to prescribe a pill) there are other effective treatments out there, cognitive behavioural therapy for one, that has been used very successful.
Unfortunately one sometimes has to fight to get these other treatments and they can, in some countries, be costly. As depressed folk are often not in a state emotionally or physically to do this fighting it may be necessary for their partner or family to do it for them. Sometimes a change in medical practitioner is necessary.
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This is considered the final stage, after we have worked our way through all the others. We may well have gone through the others a number of times, and not necessarily in the order given, before reaching the stage of acceptance.
We have learnt to accept our disease and the changes it has made to our lives and have, so to speak, incorporated it into our daily life. It is now an accepted part of us and though we may not be ecstatic about that we have learnt to live with it and move forward.
Not being saints we may backslide sometimes but in general we soon pull ourselves up and just get on with normal life.