Sarah’s story: A research volunteer trying to help others living with diabetes

I'm quite young for the complications to hit. I was diagnosed with type 2 diabetes at 21, following a difficult childhood, an eating disorder and polycystic ovary syndrome (PCOS).

It took a long time to get a type 2 diabetes diagnosis and to be started on metformin. If I hadn't had the support of my parents and access to the internet, I would have probably been hospitalised, not knowing what was going on until I had a serious diabetic emergency. I was basically told 'go away, lose weight' initially. 

My living situation has been difficult to deal with. I'm 45 years old and live in what is called an extra care complex. It's basically like sheltered housing, but it's got carers in house and safety mechanisms.

That's how serious it's got for me, that I can't live out in the community anymore.

It's safeguarding basically because I fall a lot. I suffer with regular blackouts, and many other complications from my diabetes including neuropathy. I also have pancreatitis.

My symptoms got so severe I became unable to sit at my desk and in 2020, I had to give up work. I absolutely loved my job on the parking team for the local council, helping people like me who have limited mobility independence. I hoped that by going part time, I would alleviate that. But, unfortunately, it became much worse. I tried voluntary work just a couple of hours a week and managed that for between six months and year. The pancreatitis then started to lead to hospital admissions and, unfortunately, I'm still trying to get back from that. 

The biggest thing for me was not being able to carry a pregnancy. I've had multiple miscarriages and I don't want other women to go through that. With polycystic ovaries combined with insulin resistance, I want to raise awareness.

I have a husband who has a child from a previous marriage and I'm lucky to have that family network with him. But until I met him, I didn't have that. And it was gut wrenching, not being able to have a family. I think my worst situation was when I miscarried at about 14 weeks. It's when you think you're safe. When I got to that 12-week mark, I started to think I could tell people and was getting ready to do that. And then all of a sudden little one was gone. 

Awareness is half the battle, so you can ask questions of your medical team and you can be prepared.

I didn't get this from my GP. Luckily after that I found a local pregnancy loss charity that was able to help give a little bit of counselling. I've since found out that there are teams that can support you with pregnancy and complex medical issues. I'm not saying it could have helped me, but I could have at least had a conversation with them. That was the most devastating.

Every time you get another complication your brain kind of drags you back to the past. No matter what counselling you do at the time when something happens, you still think, oh, what if, what if, what if I didn't have diabetes?

I want people to know the risks so they can ask their own questions. I did have good support, but not in the right places.