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Working while caring for a child with Type 1 diabetes: what employers need to understand
Updated: Sep 3
There’s something about caring for a child with Type 1 diabetes that can be difficult to explain to someone who hasn’t lived it.
It’s not that the diagnosis is new anymore.
You may have been doing this for years. You know how to count carbohydrates, respond to alarms, manage appointments and deal with the inevitable surprises.
But that doesn’t mean the responsibility has gone away.
Type 1 diabetes doesn’t clock off at 5pm.
And neither does the mental load of caring for someone who has it.
It's a very long-term challenge that isn't always predictable and can't be packaged neatly in to a box just because you've 'been at it for a while now'.
When caring becomes invisible
I’ve been fortunate in my working life. I’ve generally worked for organisations with family-friendly policies and had managers who were understanding about the occasional need to put family first.
But I’ve also realised that sometimes being fortunate can make the reality of caring almost invisible.
For a period, I worked remotely most of the time. If I had been awake late dealing with a hypo or checking glucose levels, nobody at work knew. If I had to take a call from school, nobody saw me step away from my desk. If I’d had a difficult night but still logged on and got the work done, from the outside everything looked completely normal.
And I was quietly making it work.
I know how lucky I was to have that flexibility. For someone who works in a shop, a veterinary practice, a classroom or somewhere they physically have to be, the options can be very different.
But there’s a lesson in it.
Just because someone is managing doesn't mean they're not carrying a lot.
Time off isn't necessarily rest
One of the things I think is particularly easy to misunderstand is the difference between time away from work and time to yourself.
A weekend might be nights spent responding to alarms, treating highs and lows; worrying about what the next reading will be; sorting out supplies and ordering more insulin; dealing with school or appointments; filling in forms for DLA or special access cards or updating IHCPs; wondering how on earth you're going to deal with the club or event or party or sleepover they desperately want to go to because it introduces so much more complexity than for the average child; or simply being on alert for the next curve ball that T1 is going to throw at you.
That's time away from work.
It isn't necessarily rest.
And when you return to work on Monday, you might look exactly the same as everyone else.
Your manager may see that you’re back at your desk.
They may not see what happened over the weekend.
Sometimes a little trust makes a big difference
In a later role, I had an arrangement with my manager that if I needed to deal with an emergency school collection, I would simply send a Teams message and go.
I didn't have to wait for permission.
I just needed to let him know what was happening, and then send an update when I was back.
It was a small thing, but it made a huge difference.
It meant that if something happened, I could deal with it without also having to worry about whether I was doing something wrong by leaving.
He also knew that if I picked up my phone in a meeting, I was just checking the CGM trace and maybe sending a quick 'eat some jelly babies' message, not checking to see if I'd been successful at bidding on something on eBay.
That sort of practical flexibility doesn't necessarily require a complicated process.
Sometimes it starts with a conversation.
You can be a good employee and still need support
I think this is where we, as parents, can sometimes make things harder for ourselves.
We want to be reliable.
We want to do our job properly.
We don't want to be seen as the person who is always asking for something.
So we make it work.
We work late.
We rearrange things.
We use annual leave to cover hospital appointments and emergency care.
We answer the phone whilst juggling a glucose monitor or a handful of jelly babies.
We deal with the diabetes stuff quietly in the background.
And eventually we can become so good at making it look manageable that nobody realises how much effort it takes.
It can take a bit of bravery to stop doing that and articulate what caring actually involves.
Not because you need to prove that you’re exhausted.
But because your employer can't support something they don't know about.
That might mean asking about flexible working, explaining that you need to be able to respond to an urgent call, or agreeing something as simple as being able to check your child's CGM data on your phone when you're at work.
You can be committed to your job and committed to your child.
Asking for something that helps you manage both doesn't make you a difficult employee.
Need a little space to think?
If you're trying to balance work, caring and everything else, it can be difficult to work out what you actually need — let alone how to ask for it.
I've created a free workbook to help you think through what's working, what's not, and what you'd like to be different.
Know what you need. Say what matters. Find what works.
Know what is available to you
There are employment rights available to working carers in the UK, including statutory unpaid Carer's Leave and the right to take reasonable time off for an emergency involving a dependant.
Flexible working can also be requested.
The government is also currently reviewing employment rights for unpaid carers, including whether further support and paid Carer's Leave should be introduced.
Your workplace may also offer more than the statutory minimum, so it is worth finding out what your employer's policies actually provide.
But knowing your rights is only part of it.
Sometimes the harder part is recognising what you actually need.
Your needs matter too
You don't have to wait until you're completely overwhelmed before you stop and think about that.
What would make work and caring a little easier?
What are you currently just putting up with?
What would you like your manager to understand?
And what would you be brave enough to ask for if you knew you weren't being unreasonable?
I created Working & Caring for a young person with Type 1 Diabetes to help you work through some of those questions.
It's a free workbook for parents of young people with Type 1 diabetes who are trying to balance caring, work and everything else — and who might need a little space to think about themselves too.
Because your child’s diabetes may always be part of your life.
But that doesn't mean you have to disappear into it.
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