Who are you? Please, introduce yourself.
My name is Sara Crowley. I am 31 years old and I’m from Mountain Ash, in the South Wales Valleys, UK.
My handle on Twitter/Instagram is @Type1Hurdles.
I’ve learned over the years to view my life with Type 1 diabetes as a hurdle and not a barrier. A continuous number of multiple hurdles each and every day. Be that a blood glucose reading that’s out of range, losing the sight in my right eye for 18 months, or dealing with my diabetes-related mental health. As hard as it can be sometimes, I don’t believe there’s anything I can’t overcome providing I surround myself with the right support, and that support comes from so many different places.
T1D diagnosis date:
2nd November 1990.
How did you feel about your T1D diagnosis? If you do not remember, perhaps, friends or loved ones could share their feelings.
I consider myself lucky, I wasn’t displaying symptoms of being unwell and I wasn’t diagnosed in ketoacidosis. My Nan noticed that my urine was smelling a little strong, so she just mentioned it to my Mum who then took me to the doctor. I was told to go to the hospital and that’s where Type 1 diabetes moved in with us, never to leave again. Three days after my third birthday.
I don’t remember my diagnosis, my parents had to deal the brunt of that. In 1990 with no internet, no understanding what this meant, other than it wasn’t good, and neither are the outcomes, it’s fair to say it turned our family life upside down from there on in.
It was upsetting then, and almost three decades later, it still is for my parents. But they did the best job they could, with the treatment available and credit to them. I felt for the most part my childhood was the same as everyone else’s; grazed knees, playing on my bike, ‘borrowing’ golf balls from the local golf course straight off the green, playing computer games on rainy days and I loved going to school and learning about the world.
What mental illness(es) were you diagnosed with and when?
The closest I’ve ever gotten to a formal diagnosis for a mental health illness is ‘low mood’ on a doctor’s note when I lost the sight in my right eye for retinopathy in 2014. But, I’ve had to find my own coping mechanisms and strategies to deal with and overcome an eating disorder linked with insulin omission, bulimia, bouts of depression and I’ve now learned to accept that I also live with anxiety. In 2015 I broke down in my diabetes clinic after feeling I was losing myself, having being sacked from work whilst dealing with going blind, not knowing what the prognosis of that would look like, and I was referred to a psychiatrist, which has a stigma in itself. I’ve never had that appointment through, but again, I consider myself lucky – I had to pull myself out of that dark place myself, and it took everything I had to rebuild and reshape my confidence again at 26 years old.
I don’t think we are anywhere close to having the level of care that’s needed to understand and help the psychology of living with Type 1 diabetes. I know mine has been overlooked for the best part of three decades, but I hope for a brighter future for those diagnosed in recent times as I push for this wherever I can.
It baffles me how the long list of possible physical complications are mentioned quickly after a diagnosis, but never the impact on mental health. By not addressing this over the years, not even acknowledging it was/is a ‘thing’ has certainly let me to diabetes burnout, self-harm and a resentment towards myself and lead to physical complications. For any healthcare professional reading this that doesn’t want to ‘open a can of worms if you can’t refer on to someone who has the right skill set’ my advice would be, many mental health problems thrive on secrecy. You don’t have to fix me – but you do need to listen. The worms are there if you see them or not. Please don’t fall into this trap of not wanting to acknowledge a problem, only for that to allow it space to grow further. That moment could just be the moment that changes the direction someone is heading. If it’s uncomfortable, or if there’s tears – this is ok, it’s even harder behind closed doors and those feelings can exacerbate. I don’t mind sharing this secret; I’m 31, I consider myself quite mentally resilient these days, but sometimes I still need a good cry. (P.S. If I’ve allowed myself to cry in front of you, there is a compliment right there and you’re privileged.) Crying, isn’t always a bad thing.
My advice for someone reading this who is struggling with any form of mental health is to find the strength you already have by keeping this to yourself, and transfer that strength to confide in someone you trust about what’s going on in your head and where you feel you are. It can feel scary, but once it’s out there it can get better. You can start to realise your strength. It’s so hard to bottle things up, it’s harder for it to get worse than there.
What is your management routine for T1D (pump, MDI, etc.) and how do you manage your mental health?
I started on 2 fixed doses and a meter which took 2 minutes. It was the old regime of having to eat x amount at x time and I think that’s what spiraled an unhealthy attitude towards my condition during my teens when it’s natural to be a bit rebellious and push boundaries. I didn’t need to dabble in illegal drugs – I had my own that I fell out of love with. I hated taking insulin, mainly the faff of it, carrying it everywhere, changing needles, it taking up so much time. Both in the physical sense and an unquantifiable amount mentally. It took most of my twenties to re-address how I felt about Type 1 diabetes. To recognise burnout. To ‘see’ my eating disorder, and realise how it had crept up on me and stayed problematic for years. To look denial right in its ugly head and all these things that I didn’t know was ‘a thing’ when I was dealing with them.
The DAFNE course was one of the first turning points – the content was somewhat good to go back to basics, but it was the feeling of normality that I’d not felt in 20 years of living with Type 1. Just to be in a room, with a handful of other people, just like me who ‘get it.’ There’s no other words to describe it, or that bond. It was powerful. This was 2010.
By 2015 I was pushing for an insulin pump. Ironically, this was a harder struggle that I’d anticipated – I was offered one when I wasn’t in the right place psychologically (I don’t think anyone else took that on board, but I wasn’t ready so I wasn’t even going to entertain the conversation in the slightest) but having halved my HbA1c in the last few months, I was told I was now ‘too good for an insulin pump.’ Almost 30 years in on this journey, I’ve realised I have a voice and I can challenge (politely and respectfully) those who appear to have more authority than me when it comes to my healthcare. My health, is my health, it’s mine. Be the advocate your future self will be proud of.
I’m now 4 years into insulin pump therapy, I mainly use flash glucose monitoring to monitor my blood glucose and between the two, it’s given me a freedom I never imagined possible. It doesn’t just allow me to get a lower HbA1c than before, it allows me to maintain that, and keep my sanity in the process. If we have to talk numbers, it’s not as low as some would want (the goal posts have since moved, again) – but I’ve had the ‘gold standard’ HbA1c and it came at a time where I was riddled with anxiety, I couldn’t leave my house for almost a year without the support of my partner and was checking my blood glucose every four hours day and night at the fear of losing my sight permanently. That isn’t living, and I was miserable.
After three operations, my sight for the moment has been restored, retinopathy is stable for the moment too, I can still drive, I work full time in a job I love, I live well, I love being a girlfriend, a daughter, a granddaughter, a cousin, a niece, a friend, a colleague, and all that I am. I continue to try and take the best care of myself I can, with the circumstances that I’m faced with. Life doesn’t stop, when complications start – see proof when I went skiing with just one working eye!
As for my mental health, I practice daily gratitude – I try to see good in each and every day, sometimes I keep that to myself, sometimes I take a photo to capture it, other times I tell people how much they mean to me, and I have been on a bit of a journey over the last few years finding weird and wonderful ways to put some time aside for some self-care. Self-care and self-compassion isn’t selfish, I’ve learned it’s as important as insulin!
And coming back to ‘Type 1 hurdles’ – I now realise every tiny thing I overcome or do for my diabetes or for myself adds to my mental strength. As if I collect the hurdles in a mental backpack; I’m stronger than I ever gave myself credit, and I’m also stronger than the stigma that comes with the diabetes label. And better still, for the most part, I am happy.
Share with us the best book you have ever read. Why should we read it?
My favourite book of all time is Harper Lee’s ‘To Kill a Mockingbird’ but the best book to have left a lasting impression on my when it comes to diabetes is Amy Marcle’s ‘Slow Suicide, living with diabetes and an eating disorder’ (2013). I read it as I was realising that I’d been chained by bulimia and insulin omission for a number of years. When I read it, I couldn’t believe that it wasn’t written about me. Amy and I were diagnosed a month apart in 1990 and while the book didn’t have a recipe to fix the hurdles I was facing, discovering I wasn’t alone and that someone had struggled the way I was, and had come out the other side gave me hope. In the words of the late Harvey Milk, ‘you gotta have hope!’ A few years on, I’m proud to call Amy a friend.
I’d said that if, in my 30th birthday year that my health allowed, I was going to travel to Nashville to thank Amy in person for sharing her journey; she saved my life. On August 3rd 2017 I traveled to Nashville with my partner Leanne, and spent the day with Amy, her husband Jason and their daughter Haley. It was wonderful. A few days previous, I’d been in London, Ontario, with Reba, founder of Dead Pancreas Anxiety, with her husband Colin and their son Liam where we met for the first time. We went to the Banting House, where the Flame of Hope stands proudly in its garden in celebration and memory of all those touched by diabetes. Both of these landmarks were something that had been on my bucket list since I was a child.
I traveled two countries, 6 stop offs and managed to connect with somebody living with Type 1 diabetes through my twitter account at every point of my journey. I guess, we all have Amy’s book to thank for this amazing trip and the connections I made!
Do you have a favourite song or a song that inspires you?
This, is a tough question. I love all kinds of music.
I guess, a song that helps me when I’m feeling a little mentally fragile is ‘Read all About It’ by Emile Sande. It’s a beautiful song, and the lyrics make me realise how important it is to be comfortable and confident in who you are, whatever that may be, battle scars and all:
‘You’ve got the words to change a nation
But you’re biting your tongue
You’ve spent a life time stuck in silence
Afraid you’ll say something wrong
If no one ever hears it how we gonna learn your song?
So come on, come on
Come on, come on
You’ve got a heart as loud as lions
So why let your voice be tamed?
Maybe we’re a little different
There’s no need to be ashamed
You’ve got the light to fight the shadows
So stop hiding it away
Come on, come on
I wanna sing, I wanna shout
I wanna scream ’til the words dry out
So put it in all of the papers,
I’m not afraid
They can read all about it’
Lyric video: https://www.youtube.com/watch?v=vaAVByGaON0
Have you ever suffered DKA?
Yes, in 2004. I was 16, had just finished my exams and was just about to start my first job at a retail store in Cardiff, the capital city of Wales. I’m ashamed to say, in equal measure, firstly, I missed my first day of work (I know there’s more important things, but I hate missing work!!) and second, I didn’t know the signs of DKA or know what DKA was; in 13 years of living with Type 1. I woke up in intensive care with my parents, my teachers and my school friends frantic with worry as they’d been told to prepare for the worst. I still don’t know how to process this information properly, so I joke it off by saying that they won’t get rid of me that easily, but I know all too well how lucky I am to still be here to tell this story. I met Prince Charles whilst at the hospital, he was coming to open the new Paediatric Ward at the aptly named ‘Prince Charles Hospital.’ He was very nice, and took the time to talk to each of the kids on the ward and their families, finishing with me and my Mum. But, it definitely wasn’t an experience worth going into DKA for! I promised myself I would never be admitted for DKA again, and I haven’t – though I should’ve been admitted many times over in my late teens and twenties, but I would refuse to go into hospital. My first stay on an adult ward at 19 ensured I’ve never had an unscheduled overnight stay again to-date, it was traumatic.
If you were offered a FREE cure for either your T1D, mental illness(es) or both, would you take it? Why or why not?
I’m almost 32, probably (possibly over) half way through my life and I’ve taken this long to be at peace with who I am, in all of my colours – so, I genuinely don’t think I would take it. Ten years ago, I would have bitten your hand off, but I personally don’t ever entertain the possibility of a cure for me. I wish for a cure for people newly diagnosed today, or for a way of eradicating Type 1 completely for future generations. Though, the cynic in me says this is a debate for another day. It’s been my greatest teacher. It’s allowed me to develop empathy. I understand that the world is mostly an ignorant place, and even more for anyone who seems ‘different’ in anyway. I appreciate that life is fragile and I like to live my life to its fullest, while I have it. If my life ended tomorrow, I’d like to think I’d made the most of my time on earth and between my health, my anxiety and all of my hurdles, I’ve learned to overcome and I’ve been lucky enough to experience true happiness, I’m not sure what more there is to experience than that.
I now live by ‘life doesn’t have to be perfect to be wonderful’ as life changed when I ditched the thought of needing to be perfect. Be that the perfect weight, the perfect body shape, or have the perfect blood glucose. Good enough, is good enough and I set my own expectations.
What is the most unique gift you have ever given someone?
Hmm, this is hard. I guess, the most unique and (probably the hardest) gift has been working on giving the gift of honesty to my partner. Seven years in, and I’ve had to learn to let her see behind my ‘brave face’ – she’s had to bear the brunt of my depression, my anxiety, she’s seen me cry with mascara down my face when I’ve asked if she would still want to be with me even if I couldn’t see her grow old. She’s had to deal with me being unconscious in New York, through a hypo. She’s seen the ‘ugly’ side of diabetes on more occasions than I care to count. It lives with us in our home, and she has to see parts that I wish I could hide from my loved ones, because I know it hurts, and that hurts me more than Type 1 diabetes ever will. She’s had to be on the receiving end of a conversation of who will pay our mortgage if I die young… knowing this isn’t being overly cautious, it could be our reality. But, among all the serious conversations and scary situations, the flip of this is, I am one half of the happiest, healthiest and strongest relationship I’ve ever had. Being able to be honest has been an integral part to that. Previously, I would often bend the truth, not acknowledge how diabetes made me feel and I certainly wouldn’t show when I was struggling. I guess I felt too proud and protective and that took its toll on me, my health, my self-esteem and my self-worth.
I hope that I can continue to share my life with Leanne, for as long as time allows and I am grateful for everything she does for us, each and every day.
Time for a shout out! Who inspires you?
I take inspiration from so many places I don’t think this would be fair to put this down to one person. Family aside, my earliest inspirations came from my teachers at school, and now in my thirties, I gain inspiration from various women in my life and throughout history in a world that isn’t set up for strong independent women. I gain inspiration from those that faced and continue to face adversity, in a world that doesn’t seem to want to equip itself with equality either and I take inspiration from those who are fearless enough to be trailblazers in these fields. The world needs more of those! ☺
Thanks for reading, feel free to message if you want to connect! ☺