Muhammad Ismail
Diagnosed aged two-and-a-half
I think some people worry that if they were completely open and honest with their clinicians, they’d be given a really hard time. But peer support isn’t like that.
I think some people worry that if they were completely open and honest with their clinicians, they’d be given a really hard time. But peer support isn’t like that.
Life with diabetes
To the outside world, Muhammad Ismail gave off every appearance of living a busy and fulfilled life. Living with type 1 since the age of two-and-a-half, Muhammad seemed to be managing his condition and coping well. But deep down, something wasn’t right.
I guess when ‘not being okay’ becomes routine, it ends up being normal.
Muhammad says he now knows he was suffering from diabetes burnout, something he never knew existed. His diabetes care started off positively, thanks to support from family and a caring specialist nurse, who encouraged him to manage his diabetes well, but not at the expense of his quality of life. As his care changed over the years and he moved from children’s to adult services, Muhammad felt increasingly frustrated by attending appointments with healthcare professionals who he felt lacked empathy or a desire to find out what was really happening with his condition.
I’d got to a point where I could get away with measuring my sugars infrequently, guess insulin doses extremely well, have limited hypos and have an HbA1c of below 6.5. I could manage exercise well and only really struggled when I went out for a three-course meal and dessert at a posh curry place
He says: But I couldn’t really see the point of bothering. My hospital appointments felt pointless. I’d turn up and be asked for my diary. When I said I didn’t have one, I’d be told off. Then they’d check my notes, scroll through my history and say ‘well done’. I often thought that was more out of shock than praise. No one ever apologised for making me feel small, they didn’t try to find out how I managed my condition or ask if there was anything they could do to help me. So, I’d be given an appointment for 12 months’ time and rush back to work.”
Working in a hospital with patients who were struggling with their diabetes, or complications, also took its toll.
"There were experiences with my job as a hospital pharmacist that would make me wonder why diabetes leads to so many bad outcomes, it would usually end up with me asking, ‘why bother?
It’s a lot easier to hide from a condition than grinding your way through your daily routine only to see others suffering when you don’t have the ability to influence or change their outcomes in a positive way. That stuff is soul destroying.”
Treatments
Muhammad’s outlook began to change after changing his appointments closer to his workplace and meeting a new doctor. When he met Dr Karen Anthony, for the first time Muhammad felt that she was genuinely interested and trying to take a moment to understand.
After that, Muhammad searched for diabetes support groups, attended in-person meet ups and actively searched for diabetes information online. It was through a local meet-up that he learned more about closed looping “seeing the artificial pancreas systems that people around the world had developed really inspired me, it was the biggest innovation I’ve seen in diabetes, and it was led by ordinary people rather than the medical community.”
It’s one thing reading about these systems and how they work, but when you see people living with them, it’s just like magic.
Muhammad says that another advantage or using the closed-loop system was that it meant he felt able to safely fast for the whole month of Ramadan, which he wished to do.
Emotions
Speaking to a health psychologist helped give Muhammad a different perspective, but sharing experiences with other people who live with type 1 and face similar daily challenges really transformed how he felt about his condition. Muhammad always recommends you speak out if you're in need of support.
Peer support gives you a mental space where you can be yourself. You can learn from people, you can express your emotions because you don’t have to explain what you have to do to manage your condition – people get it. It removes a lot of barriers.
“I think some people worry that if they were completely open and honest with their clinicians, they’d be given a really hard time. But peer support isn’t like that. You’re not going to feel judged by your peers, so you can have more open and honest discussions.”
As a keen footballer, Muhammad was motivated to manage his diabetes around the sport that he loved. Keen to build on his increasingly positive outlook, he joined The Diabetes Football Community – a supportive community for people across the UK who live with diabetes.
Activity
“Football has loads benefits for me. I use it as a way to manage my diabetes better. When I’m playing, it lets me switch my mind off. It also makes me less insulin sensitive, which is quite cool. Learning how to manage diabetes and activity was a challenge, but so worthwhile. The Diabetes Football Community is so diverse, and we share messages if we’re struggling or looking for support. People are always there to help. We all want to help make each other’s health better.”
“Today, my healthcare appointments are more of a conversation, sometimes all it takes is for someone to listen and try to understand. If you are struggling, know that you’re not alone. Bounce off people, celebrate the small wins, and take it one step at a time. There is a lot of good in this world, and I’m thankful I’ve found it when I need it most.”
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