Ebony Hussey, 30, from Caldicot has lived with type 1 diabetes since she was a toddler and has had lots of ups and downs through her journey with the condition.
While pregnant with her first child five years ago, she developed diabetic retinopathy, a complication of diabetes caused by high blood sugar levels damaging the back of the eye. Despite laser treatment, she needed an operation to stop her from going blind.
She said: “Everyone thinks this only happens to older people and those who don’t manage their diabetes well. In fact, that’s not the case. It happened to me, and it was terrifying. I woke up one day and saw blood splatters in my vision. Luckily, I was able to have an operation, which was successful, but I still lost part of my vision in one eye."
Ebony has a four-year-old child, Theodore, and a one-year-old, Madison. With her loss of vision, keeping track of what they are doing can be difficult: “I have no depth perception, can miscalculate distances and have blind spots in my field of vision. I struggle to see if it’s too dark or too bright. I often have to use a torch to read menus in restaurants and need more help with everyday tasks from my partner, family and friends”.
Juggling being a mother of young children, working and managing her diabetes can feel relentless and has had an impact on her mental wellbeing.
Missing psychological support
“Diabetes is overwhelming and exhausting. On top of that, I suffered complications of diabetes like so many people do. That’s why I decided to get CBT therapy privately. I was never offered any psychological support. I feel like appointments are often focused on stats: if your blood sugar levels are good, then you are left to get on with it,” she explained.
Ebony was diagnosed with type 1 diabetes aged three. Her older brother, Mitch, also lives with diabetes, so her parents knew how to spot the symptoms.
As a child her parents kept on top of her diabetes, but going into secondary school and through her teenage years, she found herself lying to her parents about her blood sugars: “I remembered being so embarrassed at the hospital, as they found out the truth. Although my brother had diabetes, I often felt lonely and isolated, I just wanted to be a normal teenager. Only when I was in my mid-20s and went to a Diabetes UK Cymru event, did I meet others with type 1 and felt I was part of a community," she said.
Pandemic makes matters worse
The advent of diabetes technology has also helped Ebony cope better with her diabetes. After meeting other people with diabetes and being given a CGM and insulin pump (after self-funding a series of technologies), Ebony felt she was in control. “But then I developed my eye problems and that has brought on a lot of new anxiety and burnout related to my diabetes. I received a lot of support from a friend I met through Diabetes UK Cymru, who had gone through the same ordeal. I have a fear of blindness that keeps me awake at night. I have to sleep with a light on as if I awake in the dark of the night, I fear I have lost my vision again. Yet no psychological support was ever suggested.”
The coronavirus pandemic has meant that her care has lapsed: “I understand that the NHS is under pressure, but I haven’t seen my diabetes doctor for two years and I've had a lot of cancelled or delayed appointments. That added to my anxiety and made me decide to have therapy, and I feel positive about it.”
Ebony’s case shows that Diabetes Is Serious and that psychological services need to be offered as part of routine diabetes care. Diabetes UK Cymru is supporting the Missing to Mainstream report - a new model in Wales, developed by Dr Rose Stewart, Clinical psychologist at Betsi Cadwaladr University Health Board and Diabetes UK Clinical Champion, to embed diabetes psychology in diabetes care and make it a reality for everyone living with diabetes.
