Family · Illness in the family
The first months after diagnosis
What a family goes through in the first months after a child is diagnosed with type 1 diabetes, and why the pain usually comes later.
A check-up at the hospital, nothing to suggest anything serious. For the first time, our 5-year-old daughter has blood taken. A sudden numbness. And no air:
— Blood sugar 450! We're admitting her immediately!
An overcrowded ward. The child in shock. My wife pregnant (she didn't cry)… our second child due to be born in two days, at a maternity hospital on the other side of the city. My whole career hanging by a thread, not being there is not an option… sales don't wait! Neither do the bank repayments… Now, more than ever, we're going to need money! This is no time to give in… it isn't one of the imaginable options! We'll see afterwards…
After the initial shock… we start doing things. Convincing ourselves that there are still things we have under control…
In many families, the first months are months of technical learning: carbohydrates, doses, alarms, waking up at three in the morning. Competence comes quickly, and it is a way of keeping fear at a distance: as long as you are calculating, you don't feel. It is a useful defence, not one to be ashamed of. The problem arises when it remains the only defence.
What is usually put off is mourning. Not for the child — the child is here, growing, laughing — but for the child you had imagined: the one without injections, without a sensor, without an illness that cannot be cured. This grief is not allowed to exist, because “we should be grateful it can be treated”. And yet it exists, and it needs time.
Then there is guilt. “What did we do wrong?” Nothing. Type 1 diabetes is an autoimmune disease; it does not come from sugar, from stress or from the way you brought up your child. Still, the mind looks for a cause, because a cause promises control. Guilt is, in its own way, more bearable than helplessness.
The parental couple goes through a test it rarely sees coming: one learns faster, the other feels useless; one talks, the other falls silent; both are exhausted and no longer have the space to tell each other so. This is not a sign that the relationship is weak. It is a sign that the relationship is carrying more than before.
When does it make sense to ask for psychological help? Not when you “can't cope any more” — families cope, sometimes too well. But when you notice that you are only functioning: sleep does not come back even on quiet nights, you can no longer talk about anything else, or the child has become the only subject in the house. Then a space separate from home, where everything can be said, helps.
If you recognise yourself in this text, you will find more on the page Type 1 diabetes →
If you would like to talk
Write me a few lines about what brings you. There is no need to explain everything.
Or write to me directly at radutudorache@protonmail.com.