Diagnosis of diabetes – this can’t be happening to me!
Diagnosis of diabetes is like starting a “journey” on a road that is new and unfamiliar to you. It is not chosen and certainly not wanted! It is important to remember you carry all the other parts of your life with you.
Just because you get diabetes, the rest of your life still carries on.
At diagnosis you can experience:
- and many other things
Family members can also experience these things and family relationships can change. These are normal experiences and feelings and people will work through them in time. However sometimes support is needed to adjust to life with diabetes.
Type 1 diabetes
If you are diagnosed with type 1 diabetes as a child you may experience these feelings in different ways. As a teenager there can be lots of issues that you face, and as you grow older and start to take responsibility for diabetes yourself, these feelings can change again. Adults diagnosed with type 1 diabetes may go through a period of misdiagnosis, as in the past diabetes in adults was usually type 2. However we know that many adults, especially young adults, get type 1 diabetes. You may find it hard to make the changes needed to manage your diabetes in a busy life. How you deal with the diagnosis of diabetes can be different depending on your age, personality and past experiences. The support around you is also important.
If you are diagnosed as a young adult with type 1 diabetes it can be tough as most of the information and support is targeted at children and teens and people do not expect to get type 1 diabetes in adulthood.
Diabetes can cause conflict and pressure on the parent/teen/young adult relationship over and above what people without diabetes have to deal with in adolescence and young adulthood.
Type 2 diabetes
If you are diagnosed with type 2 diabetes there can be a lot of guilt, blame and stigma – many people feel it is their fault and there is an attitude in the community that you “brought it on yourself”.
In fact, diabetes is not your fault, no matter when you get it, or what type of diabetes you get.
Of course we know there are some risk factors in type 2 diabetes that can be reduced, such as weight, lifestyle and activity levels. These are things you can try to work on if you are at risk of type 2 diabetes. There are other risk factors that are not in your control such as family history and your culture. However even lifestyle factors can be hard to tackle alone as many people who are overweight are living with problems that are difficult, and not their fault.
After diagnosis…getting on the rollercoaster
After you get the diagnosis of diabetes, you may experience lots of feelings. Some people even say they felt relief to know what was wrong with them. You will eventually travel a road from what you knew and what was familiar to you in life before diabetes came along – towards where you will end up - with diabetes being part of your life.
During this journey people can experience emotional ups and downs and often talk about it being a rollercoaster ride. Certainly the ups and downs of blood glucose levels can be like a rollercoaster too.
Eventually you will incorporate diabetes into your life. This can take weeks, months, or even years for some people.
Even after diabetes becomes a more comfortable part of life there can still be many ups and downs and unknown territory. It is a lifelong journey with no map! We are all different and how and when people make diabetes part of life varies. Some people call this acceptance or adjustment.
Even then, how you feel about diabetes can be up and down across your whole life. It gets easier but diabetes is not EASY. You will find that some days you feel upset about your diabetes and other days you feel fine. That is to be expected.
It is YOUR life and YOUR diabetes – you are the driver!
Diabetes is a condition that requires you to be the driver. Once diabetes becomes part of what you know, understand and feel comfortable with, you are more likely to have less stress and better able to continue managing diabetes when there are other stress/problems around and when diabetes is doing its own thing and being difficult!
Why can it be so tough?
Diabetes is sometimes seen as different to other chronic diseases as it requires self management by you on a daily even hourly, basis. You make most of the daily decisions about diabetes management, with guidance from your health care team. There are many targets for health to prevent long term complications and it can be easy to be overwhelmed. Diabetes is tied up with many important physical targets/tests but there can be less focus on day to day living and maintaining wellbeing. Also Diabetes can become a low priority in your life, or it can become overwhelming, taking over everything.
Things can get out of balance and it can be easy to lose your way
Diabetes can be affected by:
- travel, work & routine changes
- age/stage of life
- food and drinks
- medication and insulin type/dose/site of injection – OR
- For no reason at all it can do it’s own thing!
You can end up tearing your hair out! And this can lead to lowered motivation.
The Blame Game
Holding onto motivation can be tough when the results are not as you would like them to be and diabetes can be like that at times.
Feeling like people are blaming you for your diabetes being out of whack can lower your motivation and blaming yourself will also do this. Stand up for yourself and see other people's lack of knowledge about diabetes as an opportunity to educate them!
It can help to remember it is not an easy job. Sometimes you can make changes yourself to your diabetes management and lifestyle to get healthier results; sometimes you can do this with good support and advice; and other times it is just diabetes.
We are very lucky to be living in times where there are changes to diabetes management every day, so keeping up to date with the latest technology and management options is important. Always seek input from your healthcare team if things are not going as you would like them to be so that you can find out what changes may be possible - never suffer alone.
Have realistic goals and speak up!
It is helpful to have realistic goals and understanding of diabetes and how you can manage it. Your motivation for diabetes management will be higher if problems that get in its way are dealt with and if you remember you will have up and down days – this is forever.
Tell your health care team what your needs and priorities are and make sure you are listened to and feel comfortable approaching them with any concerns. Take a support person to appointments if you are unsure about speaking up for yourself or remembering what you are told in the appointment.
Problems are Problems
It is easy to see yourself as the problem and a sense of personal failure can creep in. It can really help to learn to see that problems are problems and YOU are not the problem! If things are off track with your diabetes there are likely to be problems getting in the way – sometimes you need to talk to someone, a friend, family member, support person or counsellor, to work out what these problems are and how to make them smaller.
Seeing this does not diminish your responsibility in dealing with the problems and your diabetes management, but it opens up possibilities for change. If you see yourself as the problem ( I am hopeless, a loser, a bad diabetic) it is hard to make changes. Tackling something that is outside of yourself is much more helpful.
So lose the blame! It really helps to see what is possible.
Motivation that comes from you rather than an external source is more likely to be sustainable.
The best way to develop long term motivation is to realise you matter and you are worth it and that it is possible to have a happy life with diabetes no matter what.
This is more likely to help you to feel good about yourself and the way you are managing things; more likely to stop you giving up if your motivation gets lower at times, and more likely to help you to find motivation again when you have a bad day/week/month!
Choose your words carefully!
Because of the way we understand what "good” and “bad” mean, talking about “good” or “bad” BGL results; “good” or “bad” foods; “good” or “bad” diabetes control or even being a “good or bad diabetic" - can for some people equate to them seeing themselves as “good” or “bad” which can be very damaging to motivation and self esteem. It can become the measure of how well you are doing and can affect motivation.
Using words like “high” and “low” BGL instead of “good” and “bad” can make a real difference. Saying “healthy” and “unhealthy” when it comes to food choices; talking about “difficult” blood glucose levels; “up” and “down” days with your diabetes - can help to remember that you are doing what you can at the time.
Understand the reality of diabetes, be realistic about it and don't beat yourself up. It is also important to remember BGL check are guides to management and not reflective of you as a person – talk about them as BGL “checks” and not BGL “tests” – this can also help.
Where should diabetes sit in my life?
If life with diabetes begins a journey, you can look at diabetes like a passenger in your car (or boat!) on this journey with you as the driver. Sometimes things can get out of balance in the car, just like with your wheel alignment. Diabetes might be too much in your face or you might have paid little attention to it. If this is the case finding the best place for diabetes in your “car” is important.
It is important consider this at that moment in time, as this can change over your life depending on what else is happening.
If diabetes seems to be all consuming, has taken over and seems to be driving your life pop it in the back seat. Don’t neglect it by leaving it out of the car altogether - just bring other areas of your life along to and focus on other things for a time. Don’t let diabetes take over!
If you have neglected diabetes and perhaps left it out of the car, on the side of the road, pop it in the front seat, next to you for a while. Take diabetes with you to gain better control over it.
Finding balance about where diabetes should “it in the car on your journey might include:
- Visiting your doctor, diabetes educator, dietician to get up to date information about diabetes management and information and reset diabetes management goals
- Seeking information from books, Diabetes Australia, the Internet
- Seeking counselling
- Seeking peer support/advice as connecting with other people, offering compassion and support to others, has been shown to enhance wellbeing and happiness and can be particularly helpful for people living with things like diabetes.
Focus on more than diabetes
Some research says that to be "flourishing" or have positive wellbeing and happiness, we need we need at least 1 of these in life:
- Satisfaction with life; and/or
- Positive affect (emotion)
AND we need at least 6 of these:
- Contribution to society
- Social integration - feeling like we fit in somewhere
- Social growth and potential
- Acceptance of others
- Social interest and coherence - feeling connected to others around you
- Self acceptance
- Environmental mastery - feeling in control
- Positive relationship with others
- Personal growth
- Autonomy - knowing you can do things yourself
- Purpose in life
Human beings often focus on immediate pleasure and feelings to determine happiness and forget these other elements of contributing, connecting, communicating, relationships, purpose in life and so on are just as important. When struggling with diabetes it is easy to just focus on what you are doing or not doing in your diabetes management. Stepping outside of these thoughts about diabetes can help you to feel better.
Of course that is important but….these other elements of life are very important as they assist in the development of wellbeing and flourishing, which in turn supports you in your diabetes.
Living with diabetes is not just about diabetes - it is about living. Being mindful of the following things can help you to stay healthy and happy.
- Find out what increases motivation for you
- Learn everything you can about diabetes and your own body
- Be an active participant in your own health care and talk to your health care team about your needs
- Talk with others about the fears of diabetes complications and how to continue to live the best possible life should complications arise
- Build a support network and be gentle on yourself
- Tune into your reactions and thoughts about other people
- Understand the ways diabetes and its daily stresses can affect people and then how this affects you personally
- Understand what you can do about lowering the stress around diabetes and generally in your life and how to manage the stress that you can not take away
- Tune into your thoughts and ideas about you and your life and examine the thoughts and emotional reactions you experience to stressful situations and events
- Work out the goals, wishes, expectations you hold for your life
- Build in regular relaxation and rest/peaceful times
- Make time to just “be”
- Deep relaxation/ meditation are wonderful, help overall wellbeing & work against the physical effects of stress, help to raise motivation and lead us to where we want to be in life. Relaxation pages
- Talk to other people – get support and make connections
- Regularly enjoy music, dancing, walking, exercise, gardening, socializing - anything that for you provides mental, emotional and physical relaxation and enjoyment
- Develop a purpose in your life and do more in your life than just worry about diabetes or start to think about it more if you have ignored it by taking active steps towards caring for it
- Develop the spiritual side of yourself, in accordance with your own beliefs
- Develop and use your sense of humour - laughter is a great remedy!
- Be pro-active. Find out your options and do what you can then make realistic goals and approach them in manageable steps
- Develop a variety of passions and interests and get involved outside yourself and outside your diabetes.
- Be clear to others about your expectations
- Avoid personalizing other people’s stories – we are all different and what happened for someone else will not necessarily happen for you
- Get professional help and counselling for problems that are hard to tackle
A healthy and relaxed “heart, head and body” is more likely to allow you to stay on the road with your diabetes – it is a life long journey!