We were lucky enough to be able to chat with Eloise Jenkins about her journey from being diagnosed with Type 1 Diabetes in her 20s, to now being a vocal online advocate for those who suffer with diabetes and the everyday challenges that come with the disease. Eloise is a Graphic Designer based in New South Wales who shares her work on social media and has since leveraged her platform to inspire and raise awareness of Type 1 Diabetes.
A huge thank you to Eloise for sharing her story with us. You can find her regularly posting about life with Type 1 Diabetes on your Instagram here.
What symptoms did you suffer from that encouraged you to seek answers from a doctor? What should someone look out for?
I suffered from all of the major symptoms you would find online. Excessive thirst, frequent urination, weight loss, fatigue, pins and needles when lying down, feeling faint and like I was going to pass out. In saying this I ignored my symptoms as we were in the process of buying a house and people kept telling me buying was one of the most stressful things to go through. So I ignored my symptoms.
Prior to my diagnosis I had avoided blood tests and having a regular doctor for years as I could never prioritise the time. However after maybe eight months of symptoms, moving into our new house and settling in – I still was feeling really unwell. I sought a new doctor after having a UTI that wouldn’t go away however it was difficult to find someone after / during covid lockdown. I’m really grateful to have found a doctor who advocates for me and got to the bottom of my symptoms. Things like blood tests, getting medication and seeing doctors take up a lot of time and mental energy so I understand why people avoid it, however I’d really recommend to get a blood test ASAP if you are feeling any symptoms or your body feels off. As scary as being diagnosed and dealing with a new lifestyle of diabetes I was really relieved for a diagnosis and to work out solutions moving forward.
What were your thoughts on diabetes before being diagnosed compared to after being diagnosed, was there any stigma that you had to break through?
I naively did not know much about diabetes prior to being diagnosed. I don’t have anyone in my family (to my knowledge) who has type 1 or any close friends so it has been a huge learning process. When I had my first initial blood test my doctor said there was a possibility of diabetes and I started thinking it may have been type 2. Looking at hidden sugar in my food like tomato sauce, bread, etc I was generalising diabetes to type 2 as this seemed to be the type I knew more about.
When I got the call that I had diabetes I was advised to head straight to the hospital and not to drive myself. Thinking about getting there I had anticipated being given some medication and a small education but what followed was a lot more than I had anticipated with six days in hospital. I had to learn how to do everything on my own from pricking my finger, eating, injecting insulin and then actually showing the staff that I could do this and take care of myself. I was woken up every hour for my finger to be pricked because my levels were so severe and told that if I hadn’t come in on the Friday, I would have been dead or seriously unwell by the Sunday. I really struggled with the initial idea that nothing about my life is spontaneous anymore and it is a constant numbers game.
I share my journey online mainly because I knew so little prior to this. It’s a lot to go through everyday and I still feel traumatised thinking about my hospital experience. I was really lucky to get there when I did, however I had a severe needle phobia and really mourned my old life.
The stigma I’ve had to face is a lot of people shaming you for food. People saying “should you eat that” or “you’re so small for a diabetic” is something I get a lot. I don’t believe anyone should be commenting on anyone’s body full stop. I don’t like correcting people but I’ve made a rule to stand up for these comments. Educating people is the best way forward to reduce the stigma.
I also really love wearing my Libre glucose sensor on my arm so that it’s seen – having someone message me on instagram about how their young daughter looks up to me because I show my sensor is the positivity I want to spread. I’ve only seen one person local to me wearing theirs however I always feel a sense of community knowing we are going through the same thing.
Is there anything that you had to change about your lifestyle to adapt to having diabetes?
I have had to change a lot about my lifestyle. Prior to this I used to work intense hours and take on as much work as I could being self employed. I am very privileged to say I can pick and choose what I do, however my self worth really struggles on the days I can’t live up to work deadlines or can’t get out of bed because of a hypo.
I’m really lucky that my partner is super supportive and will help me with appointments, waking up to a hypo and getting me supplies when I physically cannot. When I was in hospital he stayed up all night watching and reading as much as he could (bless his soul). I can only imagine how much harder this would be without the flexibility of a work from home job and for that I am really privileged. Ultimately I have to be an organised queen: having snacks everywhere, exercising at certain times of the day where my levels are better, trying to find patterns with lows/highs etc. I also have to ensure I eat regularly and get a good amount of sleep, something that beforehand wasn’t really a huge priority.
The bonus is that when I feel good I really have to take advantage and get as much done as possible, so I don’t procrastinate as much as I used to. I also prioritised having a therapist call me weekly which is available through the NDSS – having this tool to accept my new life and move through hurdles was really important. If you’re struggling please don’t be afraid to contact the support, I have gone to therapy for a few reasons in the past and having someone to talk to can really help you make a plan moving forward. I also found this really helpful to have a phone conversation and not be embarrassed to cry as in real life. Everyone should go to therapy!!
What advice would you give to other young women who also have diabetes?
The hardest thing I have struggled with is “making progress” . I still cry and have anxiety when I put on my sensor every two weeks, I still have down days and I often think “ it’s been x amount of time I should have been over this by now”. Progress isn’t linear, it’s not just always up, it’s about your relationship with yourself. I am my hardest critic so learning to go easy on myself is a constant work in progress.
Educating people is exhausting sometimes however creating boundaries and expectations is worthwhile. Besides that I just want to give you a hug as advice.
@dankdiabetesmemes on instagram is also a place where I can enjoy and laugh at my diabetes via memes HAHA, it’s the relatable content we all need. There’s also a Facebook support group where I can often use the keyword search for problems I may be having. It’s called “Type 1 Diabetes Support Group Australia”. Don’t be afraid to inject in public too, especially coming into summer. It took me a fair bit of practice and hype from friends but I proudly inject my insulin when out to a meal.
It’s really hard to summarise my experience into a blog post but I just want to say thank you. Everyone’s journey and experience is different – I’m really grateful to have a platform to share this with you.
World Diabetes Day is on 14 November 2022. If you would like to learn more about diabetes, Diabetes Australia has some great educational resources available online. If you identify with Eloise’s story or believe you may have symptoms, make sure you book in with your GP to discuss further with a health professional.
