Mya’s story: Stigma is more than just an empty comment – it’s long-lasting

Over the years I’ve faced quite a few experiences around stigma – at this point in time, it feels like facing stigma is tragically a part of my condition. 

Not all of those experiences have had someone to ‘blame’ or have given me a reason to remember them for the rest of my life. I have no issue with people having a bit of confusion about my condition. It’s safe to say that I’m an open book and I want people to learn and ask me questions. It’s when people are purposely being ignorant or will not acknowledge me or my words that I won’t accept.

Very often, people forget that a person living with a chronic condition is usually the expert, given that they live with it every day. It makes me feel helpless sometimes – that I live in a world with a condition I didn’t ask for – and yet, I’m seen as the obstacle, the problem or the inconvenience. It’s more than just an empty comment – the impact can be long-lasting.

Many instances have happened in educational settings due to a major lack of understanding. In primary school, school trips were the stuff of nightmares. It caused huge stress and often resulted in me being placed in a group where I had none of my friends because I had to be close to the teacher.

Comments, looks, stares and unfair treatment can build up like unpaid bills – they can very easily become too much and can be so hard for someone who already has an uphill battle with their mental health, like me. 

This is where I dive into my poetry – it’s very personal to me. I write mostly about my hardships because it’s much easier for me to turn those struggles into a beautiful piece of artwork.

Miscommunications adding to stress

I was also once made over an hour and a half late for one of my A-level exams as they didn’t have a separate room for me which was requested months beforehand. 

My invigilator was also told I had epilepsy not diabetes and therefore had no idea of what to do if I were to have an emergency during the exam. That not only made them nervous but also heightened my anxiety along with the pre-existing exam anxiety.

Advocating for yourself

Diabetes does affect every aspect of my life – but I am lucky enough that my family has always been right there beside me as a support. My father, who also lives with type 1 diabetes, is my biggest supporter!

Travelling is probably one of my biggest sources of stress – just the thought of going through security and any potential issues that might arise. I’ve had a few people make me feel uncomfortable in this setting, but luckily, I’ve managed to advocate for myself. 

I always travel with a letter from the hospital stating my condition, my medication and how crucial they are. I do wish there was slightly more understanding in these situations.  
 

My mental health does impact my diabetes, especially in my ability to manage it. Despite this, I know I have the right support in place, and I can absolutely notice the signs of when things aren’t quite right, and I need someone to lean on.

I wish people knew that diabetes can feel very much like a 24/7 full-time job without the luxury of holidays, time off or the ability to quit. For me, it can come with highs, lows, shaky legs, irritation, fatigue, vulnerability, anxiety, and the feeling of being quite self-critical. People – both in my education and workplace settings – still expect me to run at full capacity because my condition is invisible to the naked eye.

I find that diabetes is like the theatre. People see what’s on stage – which is me – my smile and my character. They say things like “It must be great to just eat loads of sugar when your blood sugar levels are low” or “At least you can still do everything”. 

But backstage – I feel like not many people care about that. Backstage is where it all happens – it’s me fighting to keep healthy every single day so I can go into the world with a smile on my face. It’s going on stage and holding myself together until this condition makes me unravel again. 

Over the years, I’ve tried numerous technologies, insulins and hypo treatments, to find what works best for me. 

I grew up administering insulin injections around 5-7 times a day but when I hit my teenage years, I was incredibly lucky to be introduced to pump technology. With this tiny little device, I felt pretty invincible.

With all of this technology, I feel so unbelievably lucky that it’s right at my fingertips, even with diabetes being a tough condition. I’m forever grateful that there are individuals working so hard to develop this technology – making our lives better and ultimately saving lives.

As a child, my diabetes was heavily monitored by my parents. During school years, my mother in particular, was very cautious about everything from packed lunches, school meals and school trips – ensuring I was supported.

As I’ve gotten older, I also feel that one of my biggest blessings was having a parent who also lives with diabetes to guide me. 

When I was younger, I didn’t really dwell too much on my condition. I always think that because I was diagnosed at an age before I made any real friends, the friends I made through primary school already knew me as being diabetic and therefore I didn’t face any hardship – I was just Mya.

The care I received from my paediatric team was nothing short of amazing. I grew up with two main nurses – I still am in contact with one of them to this day – she is one of the main reasons I chose to go into nursing myself. Every appointment, every blood test and every awkward topic, she was always there.

Live every moment as it comes

As I’ve gotten older and gone through puberty and normal teenage changes, my diabetes has definitely changed. At one time, I found myself not wanting my dad’s support and going through a stage where I tried to take it all on myself – I’ve definitely grown out of that stage. 

My transition from paediatrics to adult clinic is one area that I found particularly difficult. This is a particular area I’m really passionate about, advocating for a better transitional care system for young people living with diabetes.

My mindset now is about living every moment as it comes. I can’t predict what my blood sugar will be, I can’t sense if I’m going to experience any issues with my tech, and I can’t control real life. I always just try my best – my diabetes is a fickle thing that pushes me to my limits every day.

How I feel about my diabetes has changed massively over the years and some of this is down to the amazing diabetes community. It’s completely changed my attitude around my condition – I’ve gone from not wanting to talk about it, not wanting to think about it, and definitely not wanting to share it widely with others. 

Now, I’m a complete open book and I will always and forever now advocate for and be part of the diabetes community.

For others in a similar situation to me, I’d say try and be kind to yourself because the world won’t give you that time to stop. Give yourself that time and care and do not be dismissive of the importance of community and charities that are there to help you. I only wish I’d been involved with Diabetes UK sooner.

Together Type 1 is my lifeline and single-handedly put me on the map to be given opportunities such as this one to share my experiences with others – I’m so grateful.

"The thing I like most about the programme is simply that, even though we don’t see each other a lot in person, I feel like the people in that group are friends that I’ve had for over 10 years. I know that if I messaged one of them, even though I hadn’t seen them in over six months, they would still answer me without a second thought. It’s that trust and non-judgemental attitude from everyone that really keeps me going."

The Wales Youth Team is amazing, and I’m always guaranteed a good laugh no matter what event we do. It’s just so comfortable and the best feeling in the world – I leave every event feeling empowered, fulfilled and happy. 

Everyone deserves to have a friend in life, and I definitely found my people in Together Type 1 – they have given me the confidence to try and make friends elsewhere.

________________________________________________________________________________________________________________________________

Reach out for support

If you are affected by the topics highlighted within this story or other stories on our website, you can access support from our helpline team on 0345 122 2399, Mon- Fri, 9am- 6pm, or email helpline@diabetes.org.uk.

You can join our free forum – to connect with others affected by diabetes (minimum age 13). For more information, see our forum FAQs.

For those aged 11-25 living with type 1 diabetes, check out our youth programme Together Type 1 for a supportive community of people who understand what it’s really like juggling the ups and downs of life with diabetes.