Constant management and ongoing targets and tests can be overwhelming and it’s normal to feel stressed or low about living with the condition.
Identifying that there might be problems in your life that impact your type 1 diabetes, and talking about any issues with your health care team, is important. They’ll be able to help you with your needs and priorities and could give you additional support if you need it.
Understanding and accepting a new diagnosis
Being diagnosed with type 1 diabetes can feel scary and stressful, especially if you or your loved one were really ill before diagnosis. You may feel particularly vulnerable and anxious. Getting information and support will help you to feel more confident about managing your condition while many people with type 1 say that talking with others who have experience of the condition is very helpful. There are many resources, helplines, support groups and a large online community that can help you to feel supported at this difficult time. Others with type 1 are usually happy to help people who have been newly diagnosed so it’s important to know that those people are out there.
It’s natural to have the following thoughts:
- How will it change my life?
- What if I don’t want to tell people?
- What happens if something goes wrong when I’m out?
- What happens at night-time? Will I be able to sleep? Will I wake up?
- Will I be able to travel?
- Will I still be able to go out with friends?
- Will I be able to have a family?
- Will work be supportive? What happens if when I need to treat a hypo when I’m at work?
- Will people think I am different?
It is OK to think of all these thoughts. One major step is to reach acceptance. It is normal for people to go through a grief process following diagnosis as you may feel like you are grieving the loss of your previous life.
Getting your head around having type 1 diabetes doesn’t happen on a schedule, and it doesn’t go in a straight line. It is really common for people to initially feel OK about being diagnosed, but to feel distressed after about six months. It’s also normal for people to feel that they have adjusted to it at some times, but not others.
One major step of having type 1 fit in with your life is acceptance. If you can get to a place where you accept it and don’t feel like you’re constantly battling it, your mental wellbeing will improve dramatically. Just remember you are not alone, you may not feel it every day but you are so much stronger than you think. Take time to process everything and take each new challenge one step at a time – it is OK to take as long you need. Not everyone is the same, it’s OK to do it your way.
Keeping an eye out on your emotional wellbeing
Living with type 1 diabetes means you’re more than twice as likely to experience depression than those who don’t. This is because of the extra stress that managing your type 1 diabetes can cause. That’s why it’s really important to keep a look out for the signs and seek support when you need it.
Symptoms of depression can include more than two weeks of:
- Feeling sad, down or miserable most of the time
- Losing interest or pleasure in most of your usual activities
- Becoming withdrawn, not going out
- Not doing things you used to enjoy
- Thoughts about being a failure, being worthless, life is not worth living
- Feeling overwhelmed, tearful, guilty, irritable
- Having physical symptoms such as feeling tired all the time, having a churning gut, disturbed sleep and poor appetite.
If you experience some or all of these symptoms, it’s recommended that you speak to your doctor as soon as possible, so they can recommend the right treatment for you.
Type 1 diabetes burnout
Managing your type 1 diabetes is like a ‘job’, and the day-to-day effort can become too hard and frustrating, especially when the results are not what you would like. Studies have shown that you may experience worries, fears and negative feelings at some stage, which could lead to burnout.
Burnout is much more than feeling a little down. It is the overwhelming feelings of helplessness and hopelessness. It might mean you stop checking your blood glucose levels, stop or reduce insulin injections, not worry about what you’re eating or exercise, ignore or try to forget your type 1 diabetes most of the time.
How to avoid burnout
You need to be realistic and practical to help you manage the emotional side of your type 1 diabetes. Try not to dwell on your initial reaction to your hypo or hyper. Look at your blood glucose results as information to help you decide what to do next and don’t waste time punishing yourself. Use what you learn to plan ahead and make positive adjustments. It may help to read about the experiences of others.
Eating disorders or diabulimia
You may have type 1 diabetes and want to manage your weight in a healthy way, but sometimes the focus on food that naturally comes with living with type 1 diabetes means that there is an increased risk for developing an eating disorder.
If you find that you’re thinking too much about your weight or body image and you feel like these thoughts are taking over or causing you stress, it’s important that you talk to someone about how you’re feeling.
If you would like support to help you manage your weight in a healthy way, you should be able to access support from a diabetes specialist dietician through your diabetes clinic.
The T1DE Podcast about living with type 1 diabetes and disordered eating
“The T1DE Podcast” series helps share and spread awareness and understanding about this important topic. There are a series of podcasts planned where patients, families, friends and healthcare professionals can hear what members of the ComPASSION pilot project have learned and experienced diagnosing and treating people with both conditions in Dorset and Portsmouth.
Episode one – “What is T1DE?” – is available to download now, and you can subscribe to the podcast via this link: https://thet1depodcast.