A diagnosis of diabetes brings the ‘C’ word into everyday life: Control. We get bombarded with information, instructions, advice. We’re told to ‘test’, given pieces of paper to go to a clinic or hospital for a variety of even more ‘tests’. We’re monitored, measured, & judged. For some people, this becomes more important than anything else. They become hyper vigilant, testing, checking, measuring, exercising, dieting. Almost everyone diagnosed with diabetes begins their journey like this; driven by fear, anxiety, guilt, the notion of ‘control’ becomes all consuming. For some, this is relatively short lived, and things become all too hard. Those who ‘drop the ball’ early give up, bury their head in the sand, ignore advice, feel hopeless, helpless. Their diabetes remains ‘uncontrolled’. For others, the steady mantra of ‘control’ rules their lives. No matter what they achieve, no matter how ‘good’ their diabetic ‘control’ is, they strive to be ‘better’, to be ‘perfect’. To all intents and purposes, and according to most measures, their diabetes is ‘controlled’. Yet they still feel unsuccessful.
How do we find balance?
I’ve been thinking a lot about this lately. Those who have a child diagnosed with diabetes come to this with a rather different perspective. For us, the worry, anxiety, need to achieve control are driven by the primal urge to protect our child. It can be harder for us to let go of the notion of ‘control’ than for the child themselves. After all, our main role in life is to care for our child, to make life the easiest, the best, it can be.
We will access the best technology and resources available to us, whether that’s a new insulin, a new way of measuring, a new test, an app, a new alarm or monitor, a hypo dog. It can be hard to relinquish that ‘control’ to our child. At what age do we ‘allow’ them to make their own decisions about management? For many of us, the decision is taken out of our hands. Our child will refuse to allow us to administer insulin, conduct tests, record results. They may lie to us, and we have the moral dilemma of respecting their autonomy, their right to privacy, and reconciling that with our parental role to manage their health. In some families, difficult topics are discussed. In others, they are not spoken of, they are ignored. Either way, the hard subjects, sex, death, religion, war, family secrets, unfairness, prejudice, injustice, and overnight hypos, all exist. Our children will learn about them. We do have the right to choose whether or not to speak of them.
We tend to judge ourselves very harshly around these changes in our ‘control’. Yet in the end, the vast majority of children with diabetes grow up to manage their diabetes well, to live good, productive lives, to participate fully in other aspects of life, work, socially, and also often with a strong social conscience, a sense of advocacy and participation in supporting others with diabetes. Through struggle & difficulty many are very compassionate human beings, people to be proud of. In managing our own diabetes, although some Health Care professionals may seem, or indeed be, somewhat judgemental, in the end we are all doing the best we can at the time. There may be ‘scope for improvement’, but judging and blaming have no part in our Mental Health, nor in our Physical Health. We need to find our motivation in self love and in our sense of our own worth. We deserve kindness, and the best we can do.
I think one of the key notions that helps to make this journey survivable is to accept that it is just that- a journey. We travel our road in life, and sure, for everyone, some more than others, there are rough patches, difficulties. The destination is known, we don’t know when, but we do know that ‘all things must pass’. Looking around us while were on that journey is what makes the difference. Taking that holiday in Japan, even though we can’t get an Insurance company to fully insure our insulin pump; walking to the shops in the sunshine, or the rain; playing with our child because it’s fun, not because the exercise will be good for his blood glucose control; taking time out from achieving, controlling, managing, to just simply be.
This week I went back to my Yoga class. It’s been 5 years since I saw my teacher, Balbir. In that 5 years she has grown old, but she still has the mesmerising power to transport me during relaxation time to a place of calm and serenity; and the ability to lead me through physical practice which stretches and awakens my body to Life. Taking time to focus on the breath, on Balance, Serenity, and the practice of Mindfulness. Most of all, on Resilience.
Building resilience in ourselves, and importantly in our children, helps us and them to live life fully: to achieve a level of mental health that will see our journey through life as a balanced one, a life to feel gratitude for, not a life of self doubt. Yesterday I saw an almond tree in full blossom. It was growing alongside a busy highway. Clearly it had stood there for decades before the road came along, before the construction that rose around it. Yet there it was, in full blossom, old, huge, bursting with optimism and life.
Life is what happens to you while you’re busy making other plans- remember to Notice your Life.
It’s a Long Way to go, A Hard Row to Hoe
Helen has been the parent of someone with Type 1 diabetes since 1979. She has lived with the diagnosis of Type 2 diabetes herself since 2001. She was previously a Senior Diabetes Counsellor. carpe diem