It’s time for You Don’t Look Sick – our weekly series about living with an invisible illness or hidden disability.
This week, we’re with Jade Byrne, 32, from Darlington, Co Durham, who has type 1 diabetes, an autoimmune condition where the body attacks the pancreas and it no longer produces insulin, the hormone that controls blood sugar.
This is different from type two diabetes, which means the body still produces insulin but the body is resistant to it. Type 2 is often (though not always) caused by a bad diet and unhealthy lifestyle.
Type 1 diabetes, however, cannot be prevented and is not caused by diet – but often Jade faces judgement because people don’t understand the condition.
She says: ‘People will say things like “But you don’t look diabetic” I usually respond with “and what does that look like?”
‘The response is usually, “well you’re not fat”. Type 1s are only 10% of all diabetics in the UK and so when we read about diabetes in the media, it’s referring to type 2 diabetes, typically brought on by lifestyle.
‘Type 1 diabetics come in all shapes and sizes but that has no relation to the fact we are Type 1 Diabetic. It’s an autoimmune condition.’
Like with other invisible illnesses, Jade looks healthy on the outside and when she occasionally needs to use facilities like a priority seat or disabled bathroom, she has faced stares from strangers.
She explains: ‘I had to ask for a seat on a very busy train recently because I was having a hypo (low blood sugar).
‘Nobody said anything to me, but they were giving me looks. One man made me feel really uncomfortable. I know I shouldn’t have let his ignorance get to me.
‘I sometimes get a look coming out of a disabled toilet when I’ve been changing my pump, but I just have to brush it off or just give them a really fake smile.’
Jade was diagnosed at four years old after her mum read about the symptoms in an article and recognised that Jade had some of them, including drinking lots, weeing more often and feeling tired.
Jade has grown up with the condition and doesn’t know any different but as she’s got older, the technology used to control it has become much more advanced and has helped to improve her quality of life.
She explains: ‘I wear a Dexcom G6 continuous glucose monitor (CGM) and an Insulet Omnipod insulin pump.
‘I always have two cannulas inside my body. These basically act as my pancreas, along with my mathematical skills.
‘Before these devices, I would have to prick my fingers to know what my blood sugar level is and inject my insulin with an injection pen and work out the amount of insulin I needed myself.
‘Now my phone always knows what my blood sugar is and alerts me when it’s dropping.
‘My personal diabetes monitor (PDM) works out my insulin dosage for me based on the amount of carbohydrates I tell it I’ve eaten and the insulin to carb ratio that is programmed in for that specific time of day.
‘The Omnipod also drip feeds me my background insulin instead of having to have another two injections a day for that, which I used to have to have.’
Although the CGM and pump help control blood sugar, Jade’s life is still a huge balancing act, trying to work out exactly what she needs to keep everything within range.
Poorly controlled type 1 diabetes can lead to low blood sugars (hypos) or hypers (high blood sugars) and if these are not corrected quickly, someone with diabetes can become seriously ill.
In the long term, poorly controlled type 1 diabetes can lead to circulation problems, blindness, kidney problems and increases the risk of developing other health conditions.
Jade needs to account for everything from stress levels, to the amount of exercise and even the weather to try to keep her blood sugar levels within range – 4 mmol to 9mmol.
She explains that even before she’s left the house, she has already had a lot to consider: ‘Each morning I wake up, see what my blood sugar is on my phone.
‘If it seems a little high, as it often does first thing at the moment (hormones), I’ll type my blood sugar into my PDM and my Omnipod pump will give me a correction dose of insulin. I get ready as any normal person would, my devices are waterproof so showering is fine.
‘Then I’ll get my kids up and we go downstairs for breakfast, I need to give myself insulin every time I have carbs and it’s best if I give to myself about 15 minutes before I eat.
‘This means working out, what I’m eating and it’s carb content, telling my pump my current blood sugar, by checking my phone, and also telling the PDM the amount of carbs I’m going to eat.
‘Before we leave the house for school, I need to check my phone to make sure my blood sugar is above 5mmol as you cannot legally drive a car in the UK if your blood sugar is below that.
‘As long as I’m above 5mmol, I’ll then drop the kids at school, which can be stressful and cause issues with blood sugars dropping or sometimes even rising. It’s quite an unpredictable condition.’
Jade works as an actor, writer and children’s book author and the days where she is on stage mean she has to manage her condition slightly differently to the days she is at home.
She says: ‘Every day is different for me as sometimes I’m acting, which means my adrenaline is high.
‘This means I need to give myself more background insulin than usual as adrenaline sends your blood sugar up.
‘If I’m rehearsing I often need less background insulin as the adrenaline isn’t there so much but I’m using a lot of energy.
‘When I’m writing, I don’t need to alter my background. Every day though, as long as my alarms don’t beep to say my blood sugar is dropping or rising too high, I just need to check my blood sugar before I eat on my phone and then work out the carbs I’ve eaten and tell my PDM all of this information and it gives me the correct insulin.’
As a busy mum, running around after her kids can often cause her blood sugar to fall low.
She explains: ‘When I pick the kids up from school, and run around like a headless chicken between all their activities, my blood sugar often drops and can drop quite quickly.
‘If it drops below 3.5mmol, this is classed as a hypo and I need something sugary to get my blood sugar up.
‘My favourite treatment is pineapple juice and then I need a more complex carb like crisps.’
Jade’s CGM also alerts her during the night if her blood sugars start to fall as it is essential that she wakes up and has something to eat.
‘I often get woken up several times throughout the night though on a bad night as my body loves to surprise me with a night time hypo,’ she says.
‘This is why I got the Dexcom G6 because if I hypo in the night I miss a lot of my symptoms as I’m asleep.
‘With my Dexcom I get woken up by the alarms on my phone before I have an actual hypo, so I can treat it before it drops too low.’
Although diabetes is a treatable illness, it requires a lot of careful management and Jade knows to take each day as it comes.
She says: ‘Every single day is different. I rarely have an entire day with blood sugars in range, in fact I don’t know if I ever have.
‘Everything affects your blood sugar level, the weather, stress, excitement, exercise, hormones, mood.
‘It’s very hard to be a perfect type 1 diabetic and I am far from it. Sometimes, even after almost 30 years, I still forget that I am. I’ll eat something and then feel a bit ill about half an hour afterwards and then I realise I’ve forgotten to give myself insulin.
‘It’s totally relentless, but because as a Type 1, I’m very strong and resilient, because you have to be, you wouldn’t even realise I’m doing all of this monitoring and maths.
‘It certainly doesn’t stop me doing anything, it can just make things a little more tricky. I may be knackered, but I still have a smile on my face.’
Symptoms of type 1 diabetes
- Going to the toilet more – Your body will try to get rid of excess glucose through urination
- Being extremely thirsty – If you’re going to the toilet more, you’ll be very thirsty
- Tiredness – Type 1 diabetes stops your body making the energy it needs, so you’ll be exhausted
- Weight loss – Your body has to get energy from somewhere, so will break down fat stores
- Fruity-smelling breath – If your body continues to operate like this, acid called ketones will build up. This will cause your breath to smell like pear drops, and can also lead to stomach pain.
JDRF
She has a lot of support from friends, family and charities like the Juvenile Diabetes Research Fund (JDRF).
She wrote a play called Pricks and during her research, she found lots of online support groups.
She says: ‘I honestly think they are my best discovery. I am part of so many groups now and if I ever have a worry about anything, I drop a post in a group and I have a whole host of advice and support almost immediately.
‘I had the best family and friends growing up and to be able to cope and deal with type 1 you need to have the best support around you, I was really lucky.
It really does wear on your mental health though and I find speaking to other type 1s the best for this, as they know it and they get it. They totally understand you.
‘JDRF and DigiBete are also brilliant resources. They have so much content on their sites specifically to support people with Type 1 Diabetes.
‘JDRF are very very close to my heart and are such an incredible little charity that have made wonderful advances in technology happen already with so much more in their pipeline.’
Jade has had three tours of her show and it ran at Pleasance Courtyard Edinburgh Fringe 2018. She has three more tours planned.
She’s also launching a children’s book called Daisy Donald on World Diabetes Day 14 November with JDRF, with £1 from the sale of each book going to the charity.
Daisy Donald wears an invisible cape to fight an invisible illness. The illness is like a monster that she has to tame and sometimes even fight. It’s revealed later in the book that the monster is type 1 Diabetes.
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected].
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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