Diagnosis – 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
- If you are diagnosed 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
- 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
- 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…
- After you get the diagnosis and start the journey with 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 the grief, fear, denial and hopelessness but at some point this lessens – you start to have more ups and less downs lasting less time
- You start to incorporate diabetes into your life and “get back” on the track with your life, with a new chapter added to it – this can take weeks, months, or 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!
- We need to “write a new chapter” – our “diabetes” story – we need to work out what, where and how is diabetes going to be part of our life?
- We are all different! How & when people come to the point of the “journey” where they make diabetes part of life varies – Some people call this “acceptance” of diabetes
- Acceptance can be “up & down” at different times depending on what else is happening in life, such as how your health is going, other problems, etc
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 – to be in control
- Diabetes is a disease that requires you to be the driver of it – to try and stay in control
- Once diabetes becomes part of what you know, understand, 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!
WHY can it be so tough??
- Diabetes is different to other chronic diseases as it requires self management by you on a daily even hourly, basis – to be in the “drivers’ seat”
- You make most of the daily decisions about diabetes management, with guidance from health care team
- There are many targets for health to prevent long term complications
- It can be easy to be overwhelmed
- Diabetes is tied up with many important physical targets/tests and 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!
- This can lead to lowered motivation
Motivation and the blame game
- Holding onto motivation can be tough when 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 motivation
- Blaming yourself will also do this…
- Remember it is not an easy job!!!!!
- Sometimes you can make changes , sometimes you need support to do so, other times, it is not within your “control” and it is just the way diabetes is
- It is helpful to have realistic goals and understanding of what diabetes is about and how you can manage it personally
- Motivation will also be higher in your life if problems that get in its way are dealt with and if you remember you will have up and down days – this is forever
- It is important to tell your health care team what your needs and priorities are and that you are listened to and feel comfortable approaching them with any concerns
- It is important that diabetes is not either over or under focussed on in your life – a fine balance!
Problems are Problems
- It can help to learn to see that “problems are problems” and YOU are not the problem!
- If things are off track, 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, but opens up possibilities for change – if you see yourself as the problem it is hard to make changes – tackling something that is outside of yourself is much more helpful
- Lose the blame! It really helps to see what is possible
Motivation
- Seeing problems as problems and losing the blame can help to increase motivation that comes from the inside, not the outside
- Motivation that comes from your needs, your desires & your priorities for your life is more likely to be sustainable
- Some people say that seeing others suffering diabetes complications, or the “fear factor”, motivated them to make changes.
- This can often be a “turning point” for 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 why are you making changes and who for – that it is for YOU – 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 – it 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 and some people say they are a “good” or “bad” diabetic- But what does being “good” mean? In the dictionary it 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; "has a bad back"; "a bad heart"; "bad teeth";
- 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” – this can be very damaging to motivation and self esteem!
- It can become the measure of how “well” you are doing in managing diabetes 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
- Diabetes is like a “job” – day to day effort to manage can become too hard & frustrating
- Especially when the results are not what you would like
- 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 overwhelming feelings of helplessness and hopelessness –
- And that you can not go on….
If you think burn out has happened in your life look at:
- What particular areas of diabetes are causing you problems – sometimes we say it is “just diabetes” but often there are specific areas that are causing problems and we are actually doing ok with other areas. It can be helpful and very positive to see that it is not everything
- Look at what’s happening in your life that might be conflicting with diabetes care, making it harder and work out how to deal with these other parts of your life – this will in turn make diabetes management easier
- Work out what your expectations are for your diabetes management – what do you want? And are your goals realistic right now? Sometimes we expect too much or too little of ourselves. We may need to work harder, or ease off on our diabetes management
- Also important to let yourself feel sadness, anger etc –these emotions can be uncomfortable but important
- And to remember that in life there are lots of things happening besides diabetes – it may not be a priority at that time – do things how/when you are ready
Where should diabetes sit in my car?
- 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” at that time is important. It is important to look at it at that time, as this can change, depending on what else is happening in your life
- So 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 altogether – just bring other areas of your life along too, focus on other things for a time. Don’t let diabetes take over! Or…
- If you have neglected diabetes and “left it out of the car” – pop it in the front seat, next to you for a while. “Take diabetes with you” to gain better control over it. Don’t leave it on the side of the road!
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 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 1 of these in life:
- Satisfaction with life
- 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 we tend to just focus on what we are doing or not doing in our diabetes management
Of course that is important but….
These other elements are very important in the development of wellbeing and flourishing which in turn supports us in our diabetes and lives
So it is important to remember that whilst outside of actual diabetes – these things support you in life with diabetes – communicating and connecting with others, having a sense of purpose in your life, focussing on things outside of immediate gratification and pleasure, is what assists us in long term mental health and wellbeing
So in looking after your mental health and increasing your happiness and wellbeing:
- Find out what helps motivation for you personally – what do you want, enjoy in life?
- 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. Our emotions in regards to others can lead to high stress – “it’s not fair”, feelings of hate etc – lead to high stress. Try to let go of jealousy, anger and resentment and put yourself in other’s shoes – showing true compassion – can help to reduce distress in our lives
- Understand the ways diabetes and its daily stresses affect people and how this affects you personally
- Understand what you can do about lowering the stress around diabetes and generally in your life where you can 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 – What do you want?
- 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
- 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!
