You can click on the diagram below to read more about some of the common tricky feelings that people experience.
Finding out that you have a diagnosis of Type 1 Diabetes is a pretty big deal; it’s therefore not surprising that it tends to bring along a range of different feelings. It is completely understandable to experience a whole host of different emotions: this is you feeling and responding to a big change in your life. Coming to terms with the diagnosis and learning to live with diabetes is a process that takes time. It can be helpful to simply notice some of the feelings and responses that naturally come up for you over the days, weeks, months and years after diagnosis.
There may also be other emotions and responses that show up for you; everyone is different and there really isn’t any “right” or “wrong” way to feel. It may be that sometimes you feel different emotions at the same time. It is also common for people to shift back and forth between different types of experiences over time – it’s all usual and to be expected as you begin to process what it means to be living with diabetes and your sense of yourself.
Take a look at these videos if you’d like to hear Sophie Dellow talk together with her mum about her experience of being diagnosed with T1D:
Click below to learn more about the experiences of other people living with type 1 diabetes:
Being told I had [Type 1 Diabetes] knocked me sideways a bit at first….I couldn’t take in all the stuff the doctors were telling me. I wanted to shout, “hang on, just slow down a bit here – give me some space”! I didn’t really think about it back then, but looking back I went through so much different stuff over that first year or so – feeling worried, frustrated and angry, totally overwhelmed at times to be honest – sometimes rocketing between different moods from one day or moment to the next.
When I was diagnosed aged 19, I actually hid my diagnosis from most people and only told the people that really needed to know, my housemates, for example. I even hid it from my employers for quite a long time. I was just really ashamed of it, and I didn't want to be judged, especially around food. And I didn't want to be seen as weak or vulnerable or anything like that, so I kept it hidden. But hiding diabetes was such hard work and it felt like I was never really, truly myself. I wasn't my authentic self. So coming out about my diagnosis, even though it was about eight or nine years later, it was one of the most freeing things I've ever done. And the people that love me, they don't judge me for it, and actually they really admire me for it.
My top tip [when you’re newly diagnosed] is just take it day by day, even take it hour by hour….It’s natural to feel overwhelmed it’s natural to feel upset, to feel grief, to wonder what your future holds. Allow yourself to understand what’s going on day by day, and as those days tick by, you then become more confident, you understand a bit more about what’s going on, you become less frightened, you don’t panic all of the time…It will always be with you, but I think that’s the best way to cope at the beginning: take each day as it comes.
Many studies looking at people’s experiences of being diagnosed have likened the emotional effects of diagnosis to grief reactions. The loss of someone you care about triggers a grief process; in a similar way, receiving a diagnosis of diabetes can trigger grief for the loss of a body or self that was unaffected by a lifelong health problem. There are a number of different ways of understanding the grief process; please click here if you’d like to see a bit more information about grief/the bereavement process.
There’s that period of grieving,[for] the life that was. I was diagnosed when I was 20 years old… I lived it without having to carb count, without having to inject, without having to make constant decisions about everything I do. I lived 20 years of that.
Read everyone’s very different experiences and reactions to diagnosis. I’m 53 and am not diabetic but am awaiting total pancreatectomy with islet cell auto transplant. Got to admit I’ll do anything to get rid of the pain of pancreatitis but am overwhelmed by how complex living with type 1 diabetes sounds. This has all been really helpful. Thanks, peeps
Hi, I was diagnosed as type 1 in September 1993 when I was 22. I’d been poorly in June and taken into hospital but I guess things had “normslised” and I was told “I was def not diabetic”. Fast forward to September and I was on annual leave from work, had been feeling awful for months, felt like the issue was all in my head and had lost 3 to 4 stone in weight! I had no energy for the gym which was my passion. I made a doctor appointment for 330 that afternoon, was given a blood test in the surgery, I was then told I had diabetes and needed to get to hospital as my blood sugar level was at 42! I had no idea what that meant and was very scared. I arrived at the hospital around 430 and half hour later after talking with the nurse was asked if I wanted to do my own injection!?!? I said no but was told ok but you’ll do your bedtime one. Scary times. Now I’m 52 with multiple health conditions but the advances made in diabetes research mean that I can monitor my blood and treat my diabetes a lot more easily! An iPhone reading is a huge advance from stabbing my finger and comparing it to the side of the test strip container. Life’s not easy but it can always be easier which is what I’m hoping to gain in knowledge from this learning!
I was diagnosed when I was 30 , I’m now 58 and I can say this is the first time I’ve watched others talk about diabetes, the first time I’ve felt real support, my children are aware I have diabetes but I don’t think they know what it intales, my daughter has always been the one who brings me back to earth when I’m feeling down. My first husband never spoke really about my diabetes and never took account of how choices made me feel. My husband now is more aware but I don’t think he really understands it all. He is very supportive but I don’t tell him how low I get. I feel I’ve always managed my diabetes by myself. Never done course on it. I’m grateful the newish nurse has put me on this course and another one which I will be doing in Dec. I hope to learn more about living with diabetes as I’ve always seen my reading as black or white good or bad ,I hope I can find that grey and have a better life.
Being diagnosed with type 1 in my fifties was a shock and for sometime I was in denial. However now I have come to terms with this condition and this course will only enable more insight and therefore more control
I was diagnosed at the age of 16, so have had type 1 for quite a while now, I am 50 now. Both my older sisters also have type 1 as far as we know no other family members have type 1. information and treatment have came so far since I was first diagnosed. This course is really informative and teaching me new ways of coping.
Read everyone’s very different experiences and reactions to diagnosis. I’m 53 and am not diabetic but am awaiting total pancreatectomy with islet cell auto transplant. Got to admit I’ll do anything to get rid of the pain of pancreatitis but am overwhelmed by how complex living with type 1 diabetes sounds. This has all been really helpful. Thanks, peeps
Hi, I was diagnosed as type 1 in September 1993 when I was 22. I’d been poorly in June and taken into hospital but I guess things had “normslised” and I was told “I was def not diabetic”. Fast forward to September and I was on annual leave from work, had been feeling awful for months, felt like the issue was all in my head and had lost 3 to 4 stone in weight! I had no energy for the gym which was my passion. I made a doctor appointment for 330 that afternoon, was given a blood test in the surgery, I was then told I had diabetes and needed to get to hospital as my blood sugar level was at 42! I had no idea what that meant and was very scared. I arrived at the hospital around 430 and half hour later after talking with the nurse was asked if I wanted to do my own injection!?!? I said no but was told ok but you’ll do your bedtime one. Scary times. Now I’m 52 with multiple health conditions but the advances made in diabetes research mean that I can monitor my blood and treat my diabetes a lot more easily! An iPhone reading is a huge advance from stabbing my finger and comparing it to the side of the test strip container. Life’s not easy but it can always be easier which is what I’m hoping to gain in knowledge from this learning!
I was diagnosed when I was 30 , I’m now 58 and I can say this is the first time I’ve watched others talk about diabetes, the first time I’ve felt real support, my children are aware I have diabetes but I don’t think they know what it intales, my daughter has always been the one who brings me back to earth when I’m feeling down. My first husband never spoke really about my diabetes and never took account of how choices made me feel. My husband now is more aware but I don’t think he really understands it all. He is very supportive but I don’t tell him how low I get. I feel I’ve always managed my diabetes by myself. Never done course on it. I’m grateful the newish nurse has put me on this course and another one which I will be doing in Dec. I hope to learn more about living with diabetes as I’ve always seen my reading as black or white good or bad ,I hope I can find that grey and have a better life.
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Being diagnosed with type 1 in my fifties was a shock and for sometime I was in denial. However now I have come to terms with this condition and this course will only enable more insight and therefore more control
I was diagnosed at the age of 16, so have had type 1 for quite a while now, I am 50 now. Both my older sisters also have type 1 as far as we know no other family members have type 1. information and treatment have came so far since I was first diagnosed. This course is really informative and teaching me new ways of coping.