Having a chronic illness is not easy, and diabetes is shrouded with misconceptions. Many do not realise that diabetes requires 24/7 monitoring, and that often it can and will interfere with day to day life. Fortunately, it is now covered under the Equality and Disability Act 2010, meaning that people living with diabetes can be protected in the workplace. However this does not mean that discrimination and inequality has been eradicated. People living with diabetes and other chronic illnesses can be subjected to judgemental practices by their employers or colleagues. This can lead to fear of speaking out about individual needs or sharing anything to do with diabetes management, which could be dangerous if there was an emergency.
Self advocacy online and in the workplace is becoming increasingly popular, and necessary. Breaking down the barriers and tackling stigma is gradually helping people realise not only the severity of diabetes and the impact it has on lives, but also how wrong the misconceptions are. Fortunately, I am in a great job with colleagues who understand the struggles of living with diabetes, and the importance of compassion and support.
Eager to learn about other people’s experiences, I got in touch with Greta Ehlers, who has been living with type one diabetes for 17 years, and works in Copenhagen.
Have you ever encountered discrimination from an employer/colleagues because of your diabetes?
To a certain extent, yes. In the past 2 years or so, I’ve increasingly been working in diabetes-related jobs so I haven’t really faced any discrimination because my colleagues obviously had quite a large amount of knowledge about T1D. However, when I was younger I often had to deal with prejudices and a great lack of awareness. I can’t even count on one hand the number of times I have been asked whether I ate too much sugar as a child of whether I am not allowed to eat any sweets anymore. Of course these situations make me upset, but I also use them to educate people about my condition.
Have you ever been judged for when needing to take time to treat a high/low, or even time off work?
I don’t think so – at least not what I know. Something I have noticed a lot over the years is that people generally underestimate the severity of T1D and are not aware of how dangerous it really can be. To be honest, I don’t think I ever took time off after a chaotic night or told colleagues that I need a break when my blood sugar was really low. I think it’s probably because I am somewhat afraid that people won’t take it seriously and silently judge me for it. This is definitely something I want to get better at.
Does your diabetes ever come up in conversation in work or is it more kept to yourself?
I am very open with my diabetes and for me, it is important that my boss and close co-workers know that I have type 1 diabetes. The topic usually comes up quite naturally, for example when I take insulin injections or when my Dexcom alarm goes off. I feel a lot more comfortable when people around me know about my disease and I usually bring it up quite quickly.
What inspired you/pushed you to be vocal online about diabetes and your journey?
At first, I just wanted to get to know other people who live with T1D because I never really knew any other diabetics when growing up. At the same time, I realised more and more how much ignorance and prejudice there is about this disease. The fact that people know so little about type 1 diabetes definitely motivated me to raise awareness. Moreover, I feel like there are topics which aren’t spoken about, certain “taboo topics” like diabetes and sex or diabetes and menstruation, which I just like to raise more awareness about. All the positive feedback I get of course encourages me to continue sharing my journey!
Do you feel self-advocacy in the community will change the overall perception of diabetes in society?
I am sure that the online diabetes community contributes a lot to the overall perception of diabetes. However, I think it would be too optimistic to assume that this alone can change stereotypes and prejudices in the whole society. We’ve come a long way but there’s still a lot of work to be done.
What’s your biggest piece of advice for anyone experiencing problems at work due to their chronic illness?
As I’ve never really experienced troubles at work due to my T1D I will be very careful with answering this question. I think, something which helps is finding a colleague you trust and you feel like you can talk about the issue. In the best case, you’ll have an open conversation about what went wrong and what can be improved, but again – I can’t really speak from experience here. Anyway, nobody should experience discrimination at the workplace due to a chronic illness!
How are you doing?
Thanks for asking – I am fine. I am currently writing my master thesis at university and excited about what comes next, even if that is very uncertain at the moment. At the same time, Covid is definitely taking its toll on me from time to time and I really can’t wait until I will be able to hug all my friends again and go a little bit back to normal.
It is always interesting to hear how other people experience life with diabetes, and what led them to speak out about it online, and how their experience has helped others.
Follow @gretastypeone on Instagram to follow her journey of living with type one diabetes.