1. Understanding the Impact of PsA Dr Kelly Archer Clinical Psychologist Bath Centre for Pain Services, Royal National Hospital for Rheumatic Disease

2. Agenda Why psychological perspective? Why psychological perspective? Understanding impact Understanding impact Bio Bio Psycho Psycho Social Social Reducing Impact Reducing Impact Reducing exacerbating factors Reducing exacerbating factors Improve quality of life Improve quality of life Questions Questions

3. What is Impact? 85% said daily life affected, 15% said not (Chandler, 2005)

4. What areas of life are affected? 108 (25%) reported Conceal diagnosis, 304 (75%) do not (Chandler, 2005)

5. A Biopsychosocial Perspective

6. Managing LT Condition Joint Pain/Inflammation Joint Pain/Inflammation Itching Itching Nails, Skin Nails, Skin Malformation / Disfigurement Malformation / Disfigurement Flare Ups Flare Ups Side effects of medication Side effects of medication Nausea, Mouth ulcers Nausea, Mouth ulcers Changes in Appetite Changes in Appetite Ongoing Treatments /Monitoring (e.g. blood tests) Ongoing Treatments /Monitoring (e.g. blood tests) Ongoing investigations Ongoing investigations Fatigue General and difficulties sleeping Inability to exercise leading to poor aerobic and physical fitness Difficulty concentrating from the side effects of medications leading to poor performance Increased irritability from lack of sleep or medication side effects

7. Social Impact Withdrawal from Social Activities Withdrawal from Social Activities Disclosure vs Concealment Disclosure vs Concealment Relationship issues Relationship issues Intimacy Intimacy Misconceptions of public, family, work Misconceptions of public, family, work

8. Psychological Impact Unpredictability of Flare-Ups Unpredictability of Flare-Ups Frustration Frustration Anxiety Anxiety Withdrawal from activities because of low energy Withdrawal from activities because of low energy Low mood & decrease in motivation Low mood & decrease in motivation Adjustment Adjustment Malformation of joints/fingers/nails Malformation of joints/fingers/nails Bereavement – unwanted changes in appearance Bereavement – unwanted changes in appearance Difficulties getting Initial Diagnosis Difficulties getting Initial Diagnosis Stress Stress Frustration Frustration Embarrassment and Shame Embarrassment and Shame

9. Impact of PsA PsA Reduction in activity Loss of Job, Financial Stress Relationships/Intimacy Withdrawal from Social Activities Bereavement Sadness Depression Loss of Confidence Helplessness Hopelessness Anxiety Stress Frustration Anger Shame Embarrassment Excess Suffering Ongoing Treatments Unpredictability of Flare ups Reduced fitness

10. Reducing Impact PsA Reduction in activity Loss of Job, Financial Stress Relationships/Intimacy Withdrawal from Social Activities Reduce Distress Ongoing Treatments Unpredictability of Flare ups Reduced fitness Address Factors that Exacerbate

11. Reducing Impact

12. Managing Flare-Ups Planning Planning Communicating Communicating Work Work Family/Friends Family/Friends Identifying influences/triggers Identifying influences/triggers Environmental/Situational Environmental/Situational Behavioural Behavioural Emotional Emotional Unpredictability Unpredictability

13. Valued Living Identifying Valued Living Identifying Valued Living Long journey far away’, ‘Epitaph’ Long journey far away’, ‘Epitaph’ ‘Making Adjustments in line with Valued Living ‘Making Adjustments in line with Valued Living Relationships, Health & Wellbeing, Leisure, Education and Professional Development etc. Relationships, Health & Wellbeing, Leisure, Education and Professional Development etc. Direction rather than Destination Direction rather than Destination Moving AwayMoving Towards

14. Making Room for Distress Journey to Diagnosis Journey to Diagnosis Adjustment Adjustment Work Work Family life Family life Social relationships Social relationships Bereavement Bereavement Loss of function Loss of function Change in appearance Change in appearance

15. Communication – Why? Communicating information Communicating information Part of ongoing treatment Part of ongoing treatment Limitations Limitations Flare-up management – what to expect etc. Flare-up management – what to expect etc. Support Support Practical Support Practical Support Daily adjustments Daily adjustments Emotional Support Emotional Support Addressing misconceptions Addressing misconceptions

16. Communication – Who? Who is in your network? You Family Friends Work/ Colleagues Medical Professionals Strangers Groups (e.g. church, Clubs) ????

17. Communication – How? Verbal Verbal Non-Verbal Non-Verbal Communication Styles Communication Styles Passive Passive Passive Aggressive Passive Aggressive Aggressive Aggressive Assertive Assertive

18. Challenges with Communication Embarrassment / Shame Embarrassment / Shame Mind-reading Mind-reading Misconceptions Misconceptions How much information? How much information? The ‘right’ time The ‘right’ time

19. YOU ‘Others will be disgusted’ ‘they won’t understand’ ‘I need to hide this’ Anxiety Shame Embarrassment Avoid going to work Avoid Talking Conceal ‘I’m fine’ ‘snappy’ ‘OTHERS’ ‘Did I do something wrong?’ They are annoyed with me They don’t want to be bothered Confusion Irritable ‘Snap back’ Leave alone

20. Things to Keep in Mind What is the function? What is the function? What do I hope to communicate? What do I hope to communicate? What difference will that make for me? What difference will that make for me? What are the ST consequences? What are the ST consequences? What are the LT consequences? What are the LT consequences?

21. Making a Decision e.g. Concealment vs Disclosure Decision Short Term Consequences Long Term Consequences Concealing Diagnosis Disclosing Diagnosis Pros and Cons of Each?

22. Relationships Intimate Relationships Intimate Relationships Embarrassment / Shame Embarrassment / Shame Continuum of Intimacy Continuum of Intimacy

23. In Summary… Reducing Impact Identifying Impact Identifying Impact Raising awareness to bio, psycho, social issues most interfering Raising awareness to bio, psycho, social issues most interfering Vs ‘autopilot’ Vs ‘autopilot’ If could reduce the impact, what do you hope to be doing? If could reduce the impact, what do you hope to be doing? Values Values Making adjustments in line with Values Making adjustments in line with Values

24. Reducing Impact Do I need further support to move forward? Do I need further support to move forward? What type? What type? Communicating needs Communicating needs Knowing what, who, how Knowing what, who, how

25. Useful Resources Living Well with Pain and Illness – The mindful way to free yourself from suffering by Vidyamala Burch Living Well with Pain and Illness – The mindful way to free yourself from suffering by Vidyamala Burch www.breathworks-mindfulness.org.uk www.breathworks-mindfulness.org.uk www.breathworks-mindfulness.org.uk www.getselfhelp.co.uk www.getselfhelp.co.uk www.getselfhelp.co.uk Communication guides Communication guides Contact GP for local psychological services Contact GP for local psychological services

26. Thank you!