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:
  • Shock
  • Denial
  • Fear
  • Grief
  • Loss
  • Hopelessness
  • & many other things

Family members can also experience these things and family relationships can change.

Type 1 diabetes

If you are diagnosed with type 1 diabetes as a child you may experience these feelings later later, when you grow older and start to take responsibility for diabetes yourself and/or when diabetes impacts on your life in more ways. 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. This Starter Kit by Reality Check is very helpful. The Straight to the Point book by JDRF which we had a lot of input into, is also a great resource. Diabetes can cause conflict and pressure on the parent/teen/young adult relationship 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 roller coaster

After you get the diagnosis of diabetes 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 & downs and often talk about it being a rollercoaster ride. During these down times you can experience grief, fear, denial and hopelessness but at some point this lessens – you start to have more ups and less downs lasting less time, starting to incorporate diabetes into your life and “getting back” on track with your life. This can take weeks, months, or even years.

Even after diabetes becomes a more comfortable part of life there can still be many “ups and “downs”,“roadblocks” and “unknown territory”. It is a lifelong journey with no map! You need to “write a new chapter”of your life and work out what, where and how diabetes is going to be part of your life. We are all different and how & when people come to the point where they make diabetes part of life varies. Some people call this “acceptance” or adjustment. Acceptance can be “up & down” at different times depending on what else is happening in life, such as how your general health is going, other problems in life and so on.

It is YOUR life and YOUR diabetes – you are the driver!

It’s important for many people to feel they are the “driver” of their life and to feel in control. Diabetes is a disease that requires you to be the driver and to try and stay in control of it. Once diabetes becomes part of what you know, understand and feel comfortable with, you are more likely to have less stress & better able to continue managing diabetes when there are other stress/problems around and when diabetes is doing its own thing and being difficult! You can read more at our Stress Management pages.

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 & 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 is a sensitive creature and can be affected by:

•  stress
• activity/exercise
• illness
• excitement
• travel, work & routine changes
• hormones
• age/stage of life
• food & drinks
• medication, & 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 we 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 yoiurself 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 not within your “control” and is just the way diabetes is. We are very lucky in 2010 to be living in times where there are changes to diabetes treatment options 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.

It is helpful to have realistic goals and understanding of diabetes and how you can manage it. Your motivation for diabetes management wil 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

In our world we often end up seeing ourselves as the problems 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 - hang on and reach out to increase motivation

Seeing problems as problems and losing the blame also helps to increase long term motivation that comes from the inside, not the outside.

Motivation that comes from you rather than an external source iis more likely to be sustainable.

Some people say that seeing others suffering diabetes complications, being "threatened" by their doctor, or the “fear factor”, motivated them to make changes. This can be a “turning point” for some people, but it does not build sustainable long term motivation. In fact people often find that if they are not getting anywhere with their diabetes this “fear factor” can lead to reduced motivation – sort of a “what’s the point?” feeling.

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. Get support to work out ways of making sure you can stick at diabetes care in the long run as iit is not easy to do it on your own.

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” should motivation get lower at times and more likely to help you to find motivation again when you have a bad day/week/month!

Good and bad diabetes control = good and bad diabetic?

People often talk about “good” & “bad” diabetes (you know, "oh you have the bad diabetes"!) and some people say they are a “good” or “bad” diabetic.

But let's take a look at what being “good” really means.

In the dictionary good means:

• “Having desirable or positive qualities; “Morally admirable, deserving of esteem and respect “; “Agreeable or pleasing; "we all had a good time"; "good manners“

And Bad means:

• “having undesirable or negative qualities; "a bad report card"; "his sloppy appearance made a bad impression"; "a bad little boy"; "bad luck"; “regretful: feeling or expressing regret or sorrow or a sense of loss over something done or undone;“below average in quality or performance; “physically unsound or diseased.

So little words can have big meanings!

Because of the way we understand what good” and “bad” means, 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 themself as “good” and “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” control; “up” and “down” days with your diabetes - can help to remember that you are doing what you can at the time.

Understanding the reality of diabetes can help, being realistic about it and not beating 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.

Diabetes Burn Out

All of this stress & frustration can lead to diabetes burn out and this is a common problem for people with diabetes.  Diabetes is like a “job” and the day to day effort to manage can become too hard & frustrating. This is especially true when the results are not what you would like them to be and you know you have done all you can and worked hard. Burn out can occur at many points, can last a short time, be ongoing, or come & go. Burn out is much more than feeling a little down. It is an overwhelming feeling of helplessness and hopelessness and that you can not go on with your diabetes managment - people often give up at this point and depression can set in.

If you think diabetes burn out has or may happen look at:

• What particular areas of diabetes are causing you problems. Sometimes people say it is “just diabetes” that is the problem, but often there are specific areas that are causing problems and you are actually doing ok with other areas. It can be helpful and very positive to see that it is not everything about your diabetes that is difficult. Seeing the things you are doing well with gives you something to build on and gives perspective.
• What’s happening in your life that might be conflicting with diabetes care? What is making it harder at the moment for you to manage diabetes? What blocks and barriers are there and how might you deal with these other parts of your life? Sorting these things out will in turn make diabetes management easier.
• Work out what your expectations are for your diabetes management at the moment? What are your targets? What do you want? And are your goals realistic right now? Sometimes we expect too much, or too little of ourselves. You may need to work harder, or ease off on your diabetes management deoending on what else is happening in your life and with your health.
• Are there difficult emotions you need to deal with? Emotions such as sadness, anger and grief may be present due to diabetes diagnosis, depression or another event in your life. These emotions can be uncomfortable but very important. You need to acknowledge and accept these feelings, then work through them so you can move on with your life. Seek support if needed.

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 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 our lives depending on what else is happening. Our Ambassador Jack Perkins (right) certainly had to make diabetes sit firmly in the passenger seat of his V8 car when diagnosed with type 1 diabetes!

If diabetes seems to be all consuming, has “taken over” & 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!

Or…

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 “sit in the car” on your journey might include:

• Visiting your doctor, diabetes educator, dietician to get up to date information about diabetes management & information & reset diabetes management goals
• Seeking information from books, Diabetes Australia, the Internet etc
• Seeking counselling
• Seeking peer support/advice – from places like Reality Check for young adults with diabetes at www.realitycheck.org.au and here at www.diabetescounselling.com.au etc 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.

Diabetes, happiness and flourishing 

Positive Psychology argues quality of life should be as important as the quantity and that our focus needs to shift from illness and disease to health and well-being. A key component of this is mental health and good mental health requires more than the mere absence of mental illness.  We need to actively nurture and work on having good mental health, as we do with working on our physical body . Most people associate the term mental health with mental illness so in positive psychology the word “flourishing” has been used to describe mentally healthy adults who have high levels of emotional well-being in their lives. (Corey Keyes) http://www.centreforconfidence.co.uk/pp/overview.php?p=c2lkPTMmdGlkPTAmaWQ9MTc2

On the flipside, the absence of mental health can be described as “languishing”. Adults who are languishing have little emotional, psychological or social well-being, yet are not living with clinically diagnosed depression.

To be flourishing 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
• Social growth and potential
• Acceptance of others
• Social interest and coherence
• Self acceptance
• Environmental mastery
• Positive relationship with others
• Personal growth
• Autonomy
• 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 we are doing or not doing in our diabetes management.

Of course that is important but….these other elements of our lives are very important as they assist iin the development of wellbeing and flourishing, which in turn supports us in our diabetes.

So in managing your diabetes, mental health and wellbeing:

• 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 needs, your thoughts, your ideas and your stories 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!