Similar to Ashlyn, I was able to contact Marnie through Instagram. She was very forthcoming in sharing her experience and she emailed me back these answers which go into great detail of her experience with diabetes. What I find to be a regular occurence in the three responses I have received so far is the stigma attached to diabetes and how this can have such an impact. Spreading awareness and education about diabetes and the differences between type 1 and type 2 diabetes would lead to an understanding of diabetes and would eliminate this idea of shame and embarrassment. Hiding diabetes and diabetes technology can be dangerous and put diabetics at great risk, so not only is it dehumanising for the person but it is also unhealthy for them. I can completely understand why Marnie wants to spread awareness and her responses have certainly helped me, thank you Marnie!!
Your name, your occupation, and for how long you’ve been a diabetic?
Hello! My Name is Marnie, and I have had Type 1 Diabetes for just over Seven years. I got diagnosed in September 2013, which was just after my 19th Birthday.
When were you told you had diabetes and what was that experience like?
I was given my official diagnosis whilst in Hospital after many months of feeling extremely unwell. I began experiencing the typical symptoms of Diabetes in March 2013, where I was turned away many times by my Doctor and my symptoms continuously overlooked. I attended my surgery many times over the months, requesting blood tests, second opinions, but my deteriorating health was put down to my age (Hormones/Growing etc.), pre-existing mental health issues and dehydration.
Around the 13th September 2013, I had come home from a hair appointment and felt the worst I had done since experiencing my current symptoms. All I needed to do was sleep so that is what I did. I remember waking up to my Mum telling me that she was talking me to a nearby walk in centre, as she was extremely concerned. When I arrived at the centre, I was seen straight away by a doctor who urged me to go to hospital straight away. This was after a brief description of my symptoms, a Blood Glucose test and a Urine sample.
I arrived at my local Hospital within 1 hour. I only had to wait around 5 minutes before seeing the doctor who said that I needed to have many blood tests. I assumed I would have gone back to the waiting area, but instead I was taken to a High Dependency Ward where I was reunited with my mum. The doctor sat me down and explained that my life was going to be very different now. She said that they had my blood tests fast tracked, where they found extremely high levels of glucose confirming that I was now going to live with Type 1 diabetes.
Overall my experience was frustrating, emotional and unforgettable.
What assistance / information / technology were you given for your diabetes?
After a few days in Hospital, I was eventually introduced to a lovely nurse from the diabetes centre. She made me feel at ease as she explained more about type 1 diabetes, what my treatment would be and most importantly how to inject myself with insulin every day. I was given two types of insulin, needles, lancets, testing strips and a monitor to check my glucose. It was all quite overwhelming.
When you were told you had diabetes, did you know what it was / did you know anybody else with diabetes?
Luckily I knew a fair bit about diabetes as I went to school with friends who lived with the condition themselves. My great Grandad also had type 1 diabetes and I remember my Nan and Mum explaining in to me when I was younger. When I look back at what my understanding of diabetes was, compared to what it is now, it is extremely different. To know about a condition and to live with it do not compare what so ever.
Did you tell people you had it? Do you tell people now that you have it or is it something you keep hidden?
I told the people who I was close too about my diagnosis, as it was for my own safety really. It definitely isn’t something I bring up straight away in a conversation, but the alarms from my pump and continuous glucose monitor are often a conversation started in themselves. Nowadays I am more open, as I am now more exposed to stigma and assumptions through people that are perhaps not educated on diabetes, therefore I now use social media to interact with other type 1s, but more importantly share my life living with the condition/spread awareness to eliminate stigma.
What are the main struggles of living with diabetes? And what part does the technology play in this?
Over the last two years, I have lost all of my Hypoglycaemia awareness. When your blood glucose drops below 4mmol you would usually show symptoms, such as; dizziness, shaking, feeling hot and so on. This would naturally urge a person with diabetes to test their glucose and treat with sugar, glucose tablets as required. This is also the case when sleeping. A person experiencing hypoglycaemia would usually wake up, as your body would again, feel the typical symptoms.
Unfortunately for me, this is not the case. Because I no longer have my awareness I can no longer tell when my glucose is too low. I also have the issue where my glucose levels drop at an extreme rate. This causes me to completely black out, where I need assistance to bring my levels back to normal.
In recent months I have been given a Dexcom (continuous glucose monitor) and an Insulin Pump, where together they will sound alarms to notify me that my glucose levels are dropping, as well as cut off the supply of insulin to limit my hypoglycaemia attacks. The other amazing part about the Dexcom is I can also connect my Mum and my Boyfriend to the app where they can also be alarmed when I am experiencing Hypoglycaemia and can take action if they do not see a rise in my levels. (This piece of technology is extra helpful for me, as I live alone and could at any time be in danger. This definitely puts my mind at ease knowing I am constantly being monitored)
Since using these two pieces of technology, I have noticed my glucose levels to be more in an ideal range. Unfortunately, I still experience low glucose episodes leading to blackouts, but this is something myself and my Nurse are working on.
If you could design your own diabetes technology, what would it look like?
A glucose monitoring system and insulin pump far more discreet than those already on the market. The ones I use are very visible, difficult to hide and the tubing is quite inconvenient. I have found that since wearing diabetes technology, my body confidence has decreased rapidly and my anxiety levels have risen. I believe this is because I find it difficult to hide the equipment and when I want to wear anything tight, (an evening dress for example) I feel all people will take notice of is the wires poking out.