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0 By Kate Carre
I am going to tell you a story that reflects rather badly on me – or rather on my younger self. When I was a student nurse, there was a child on the ward diagnosed with Type 1 Diabetes. The mother cried with me and said, “He hasn’t done anything to deserve this.” And I hopefully looked empathetic and said the right things, whilst somewhere deep down thinking this was an over reaction. That parents tend to get emotional about their children. I thought of the patients on the children’s cancer ward and the Paediatric Intensive Care Unit and those in the hospice. And I thought that this child was lucky to have a relatively common and very manageable condition that would still allow a completely normal life.
I know now
Now I know better. My own daughter was diagnosed with a genetic form of diabetes called MODY (yes, there are more than two types) just over two years ago. And we have a lot of friends in the Type 1 community.
I cringe at that naïve student nurse I was, whilst simultaneously envying her. How blissfully lucky was I to be so totally unaware of the impact of this lifelong, life-threatening condition. One from which there is no respite. I naively thought that diabetes was something that only became an issue at mealtimes, when an injection of insulin would become necessary. I had no idea what a blunt tool insulin administration is. How variable the human body is in the way it responds to doses of insulin. And the constant, round the clock need for vigilance and monitoring to prevent a life-threatening emergency.
Blood sugar
These days, there is always a part of my mind that is thinking about blood sugar. I even dream about blood sugar. And my daughter, along with her friends, will be occupied by blood sugar every day of her life. Unless a cure is developed, nothing can ever be spontaneous or straightforward again.
And somehow, as a parent, you grieve the carefree life your child should have had. I am reminded of it every time there is a school trip. It necessitates care plans and someone to accompany her, checking and double checking which staff will be present. Who is happy to do what and what time will they be eating. In my mind, there is an alternative me, cheerfully waving her off with her packed lunch and not needing to go through the detail of the day with a fine tooth comb.
When we go swimming with a bag of apple juice and glucose tablets at the side of the pool, and when she walks out of school or Brownies and I look at her monitor before asking what kind of day she had, that alternative me is there, oblivious to the hard work involved in managing this condition day to day. I’m casually throwing a swimming costume and towel in a bag. Or texting a quick yes to a party invitation without a lengthy Q&A session to enable me to plan it all.
But this is a mental health blog
So why am I writing about diabetes on a mental health blog?
I am doing so because there is an extremely high incidence of mental health issues amongst sufferers of all kinds of diabetes. Diabetes UK estimates that 3/5 people with a diagnosis of Type 1 diabetes will also be diagnosed with a coexisting mental health problem during the course of their life. And that at any given time one in three will be having treatment for their mental ill-health. I am writing this because those facts don’t surprise me and because I suspect they are an underestimate.
My child feels different from her peers. She feels anger and resentment; by necessity she is singled out every single day, in small ways. She has absorbed the condition into her identity, and I know that when people hear her name, they think “the one with diabetes”. Not in a negative way but in that it is a characteristic that marks her out.
But she is so much more than a diabetic child. She is the child who loves animals, who loves reading and drawing. She is quiet and thoughtful, and she can be stubborn and independent. And she has a life to live that is full of potential. She mustn’t allow diabetes to take it over but take it along for the ride as an unwelcome pain in the arse of a passenger.
Eating disorders
As a parent who has recovered from my own eating disorder, I have worked so hard to make food a non-issue in our house. I have never talked about good foods vs bad foods, never banned any food, never insisted on clearing plates. I’ve never made dessert a reward, never linked eating and exercise with virtue (“being good”). Now, I have no choice but to count the carbohydrates in everything my child eats, and teach her to do the same. A negative relationship with food is being set up, whether I like it or not. All I can do is try to minimise the impact.
Children with diabetes are a very high risk group for eating disorders and I can see why. The necessary focus on food, the issues around identity and body image. Self-consciousness associated with medical devices attached to the body. Plus the pressure of good management and feeing responsible for mitigating parental anxiety. Add to this the elevated risk of depression that comes with living with chronic conditions. And along with anxiety around blood sugar fluctuations, it isn’t hard to see why the stakes are high.
Diabetes and mental illness
Diabetes and mental illness have something else in common; there is a stigma and there is blame. The association between some (but not all) cases of Type 2 Diabetes with lifestyle choices, particularly high body weight, has been prevalent in the media. As though obesity is simple to address, and neglecting the many reasons relating to mental health and coping that lead people to obesity in the first place. I wouldn’t be surprised at all if there is a higher rate of Type 2 diabetes in the depressed population. I have no time for stigmatising sufferers of Type 2 or blaming them for their own condition.
However, there is usually no distinction made between Type 2 diabetes and Type 1, which is an autoimmune condition and always results in insulin dependence. MODY diabetes is never mentioned. This results in children living with the message that their condition has been caused by something they did. And parents have to live not only with the fact that our child has a long-term medical condition but also with the fact that most of the population thinks we caused it. That adds to the stress experienced by families dealing with diabetes, and stress in turn impacts diabetes control.
No “control”
Blood sugar is incredibly difficult to “control”. Swings of high and low are inevitable. There is no “control” in diabetes, only doing our best and not giving ourselves a guilt trip when we feel we have fallen short in this job we didn’t ask for. As parents, we walk a tightrope between safeguarding our child’s health (both immediately and in the long term) and keeping diabetes firmly in its place. And not allowing it to become the focus of our lives or an end in itself. We control diabetes in order that we and our child can live our lives. If we’re not living our lives, we might as well not bother.
And as we walk this tightrope, we are really bloody tired. Diabetes doesn’t sleep at night and neither do we. Our nights are punctuated by alarms and blood tests and glucose gels and correction doses. All these everyday things I never knew existed in the parallel twilight world I was waiting to fall into.
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We handle life-threatening drugs while we haven’t had enough sleep to function. We make these decisions and learn about management, often without specialist support. And it isn’t going away so there is no point in complaining. And we won’t complain, because we do it willingly. In fact, if we could make diabetes vanish by turning cartwheels all night long, we would. But we are stuck in this situation where the stakes are high and the control we have is minimal, a recipe for anxiety.
So I am certain that caregivers’ mental health suffers and that the rates of mental illness amongst parents of children with diabetes will be much higher than the general population.
Research…and cure?
There is so much research in progress relating to a cure for Type 1 diabetes. Islet cell transplantation has recently been successful in a small number of patients. Meanwhile, the development of an artificial pancreas is in the pipeline, potentially automating insulin delivery and dosing decisions. My daughter’s diabetes is genetic. The research into gene expression is promising for those with Type 1 and 2 as well as monogenic forms like my daughter’s.
We can only hope that our children will live part of their lives free from the burden of managing diabetes. The effects will be far-reaching, both for affected families and the NHS. Funding that addresses long-term conditions will have a knock on effect on mental health spending nationwide.
We can’t cure mental illness and it would be naive to think that there is one universal answer to illnesses of the brain. But for diabetes, a cure is within reach. Let us do all we can to get there. And along the way, if we each tell one person about diabetes and its impact, that will make a difference to those living with it. One less person who thinks our child ate too much sugar; one less person who thinks it’s not a big deal. And one less person like the student nurse I was, thinking “Count yourself lucky it’s not cancer”. Let’s do it. Let’s unite.
Reproduced with permission, originally posted on onmymindblogging
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