Being You with PKU

1. Being You with PKU Dr. Danuta Orlowska Clinical Psychologist Camden & Islington Mental Health and Social Care Trust Danuta.Orlowska@candi.nhs.uk

2. Contents of the session A. Looking after our mental well-being B. Dealing with unhelpful thoughts C. Applying what we’ve learned to living with PKU

3. Section A LOOKING AFTER OUR MENTAL WELL-BEING

4. What is mental well-being? • Feeling capable and competent • Being able to handle normal levels of stress • Being able to maintain satisfying relationships • Being able to "bounce back" from difficult situations

5. Some suggestions… • Have a range of things to do which give you a sense of achievement and enjoyment • Keep physically active – exercise has a positive impact on mood • Spend some time outdoors • Keep in touch with friends and loved ones

6. More suggestions… • Set realistic goals • Write down 3 good things which happen each day • Other suggestions? (from participants’ own experience) • Develop a range of helpful coping skills (e.g. breathing for relaxation, exercise, dealing with unhelpful thoughts, talk/share worries)

7. Section B DEALING WITH UNHELPFUL THOUGHTS

8. How we feel is not just linked to what is going on in the outside world, but also to a) what is going through our minds about it b) what we do (or don’t do) as a result

9. Everything is inter-related! SITUATION What goes through my mind Body Reactions How I feel What I do/ don’t do

10. For example: getting a promotion • What could be going through someone’s mind? • … and how might they feel as a result? • Please note: different things going through our minds are linked with DIFFERENT feelings

11. Here’s some possibilities… WHAT COULD BE GOING THROUGH SOMEONE’S MIND HOW THEY MIGHT FEEL I deserve promotion as I’ve worked hard Proud & my colleagues will support me It’ll mean longer hours and extra work Concerned It’ll help me pay off the mortgage/debts Relieved

12. Here’s some more possibilities… WHAT COULD BE GOING THROUGH SOMEONE’S MIND HOW THEY MIGHT FEEL I’ll never learn the new skills I need Anxious The boss is just waiting for me to fail More anxious I’m no good and it’s only a matter of time before they realise & fire me Even more anxious

13. So… • Sometimes our minds work against us • The unhelpful things that go through our mind can set up vicious cycles • Consider how you might behave if you thought a) you deserved the promotion & had support b) thought being a little concerned was normal c) the boss was just waiting for you to fail (which may not even be true!)

14. All of us can sometimes fall into unhelpful patterns of thinking • Being able to spot connections between what is going through our minds and how we feel is an important part of looking after our well-being • There are some common types of unhelpful thinking

15. Common types of unhelpful thinking 1.‘All or nothing thinking’ - seeing things as totally wrong or totally right, 0% or 100% This is unrealistic. Life is generally not that clear cut and there are many in-betweens. 2. Over-generalising - assuming that after one unfortunate event, it will always happen again Often there’s no reason that this will be so.

16. 3a. Mind reading - concluding that someone is reacting badly to you without knowing or checking what they are really thinking 3b. Fortune telling - anticipating things will turn out badly and feeling convinced that your prediction is a fact The evidence may not bear out what you think.

17. 4.Catastrophising: expecting the worst case scenario will occur But how do you know that it will happen? And how much will it help if you dwell on it? 5. Using a mental filter: looking at only what has gone wrong This ignores your strengths & what went well

18. Reacting to things we’ve done in helpful ways or unhelpful ways… If we do something new or difficult and don’t do it very well: • “I must be stupid and no good at anything. I’ll only fail if I try again…” • OR “Maybe it was hard & I didn’t give myself time to learn it. I’m usually good at things.”

19. More helpful? Less helpful? If we do something new or difficult and we do it well: • “It was a fluke. Usually I’m no good at anything...” • OR “I tried hard and deserved to do well. I’m pretty good at things...”

20. What impact could these different reactions to doing well and not doing well have on how someone approaches their next challenge?

21. It’s more than just “positive thinking” What might be some reasons that telling people to “just think positive” could miss the point?

22. The problem with “just think positive” • Often ignores the context/individual situation • May over-simplify things: “You can do it” might not be so easy and does not take real difficulties into account. Doesn’t help people problem-solve. • May be unrealistic • May set people up for failure

23. 3 things to remember… • Just because something’s gone through your mind doesn’t mean it’s true… • Ask is it HELPFUL or UNHELPFUL for you to think or act in a particular way? • If UNHELPFUL, work out other ways of looking at/dealing with the situation/or think what you’d advise someone else…

24. Section C APPLYING WHAT WE’VE LEARNED TO LIVING WITH PKU

25. What goes through our minds can make a difference in PKU-related situations

26. Going back on diet…[Or any other goal you have…] • Decide on your goals (consider what you DO want to do rather than what you don’t) • Break larger goals down into chunks • Make an action plan for what you are going to do: when/where/how often etc • Make a start BUT… what’s missing?

27. What if something goes wrong… • An action plan doesn’t take setbacks into account • What leads to us not keeping to plans? • Setbacks might mean we give up… especially if unhelpful things go through our minds Setbacks are normal!

28. So… add a “Coping plan” • Work out risk situations in which keeping to new behaviour might be hard • Develop a coping plan… What to do when faced with a difficult situation • Accept setbacks as normal – this is more helpful than blaming yourself and giving up • Adapt your action plan if necessary

29. Lapse of PKU diet when out… UNHELPFUL view of it HELPFUL view of it

30. Telling someone new about PKU UNHELPFUL way of doing it HELPFUL way of doing it

31. Going on holiday on PKU diet… UNHELPFUL way of planning it: HELPFUL way of planning it:

32. Summary (I) For PKU-related and many other aspects of our lives… • Remember when faced with any situation, the first thing that pops into our minds might not be right or helpful • Try to think about things from more than one point of view

33. Summary (II) • Take time to work out new helpful ways to think about things/solve problems/deal with setbacks • Try doing more of what works for you and less of what doesn’t • Remember change takes time but you can take steps towards your goals bit by bit

34. THANK YOU! Danuta.Orlowska@candi.nhs.uk Suggested reading: Gillian Butler and Tony Hope (2007) Manage Your Mind: The Mental Fitness Guide Oxford University Press; 2nd Edition.