Rebecca Gray Toby Newton-John Jamie Lee Claire Ralfs

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1 Rebecca Gray Toby Newton-John Jamie Lee Claire Ralfs From person to patient, and partner to carer: the transitions and transformations of couples affected by chronic illness and how counsellors can help them

2 Overview Background Literature Review Practice Recommendations Tools and resources

3 Chronic pain and relationships (Toby Newtown-John) Background Expansion to chronic illness (Medtronic Philanthropic Funding) Collaboration with RASA (Practitioner consultation) Tools and resources (Website)

4 Definitions Chronic illnesses are long-term conditions characterized by complex causes; multiple risks; long periods of latency; and impairment or disability. Examples include coronary heart disease or hepatitis C. Long-term mental health illnesses are also considered chronic illnesses, such as, depression, schizophrenia and bipolar disorder.

5 Definitions Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage or experienced in terms of such damage. Chronic pain refers to pain that has persisted for a period longer than three months. This form of pain is now considered to be a disease and rather than just being a symptom of some other condition, as it is often experienced despite attempts to treat it with medications and other therapies.

6 Literature Review Bad relationships are bad for you Bad relationships make it harder to manage health issues The ability of the partner to be supportive erodes over time Caring for someone with chronic illness affects the carer s wellbeing Improving the relationship can improve their health

7 Practice recommendation People with chronic illness may be vulnerable in relationships; or may be acting out their illness Loss of intimacy or couple distress may be masking power imbalances in relationships Screen for power imbalances in the couple relationship and wider family relationships before using these tools In particular, domestic and family violence may prevent therapeutic work or escalate after therapeutic work

8 Website materials Therapist Pre-session background briefing Patient Wellbeing fridge magnets Partner Self-guided couples In-session guided therapeutic chronic illness tip sheet Partner tip sheet In-session relationship checklist chronic illness videos Partner video Other chronic illness resources (podcasts, books, websites)

9 Website materials Therapist In-session background briefing Patient Wellbeing fridge magnets Partner Self-guided couples In-session guided therapeutic chronic illness tip sheet Partner tip sheet In-session relationship checklist chronic illness videos Partner video Other chronic illness resources (podcasts, books, websites)

10 Website materials Therapist In-session (or pre-session) briefing Patient Wellbeing fridge magnets Partner Self-guided couples In-session guided therapeutic chronic illness tip sheet Partner tip sheet In-session relationship checklist chronic illness Partner video videos Provides background on reasonable hope (Weingarten, 2010) Contrasts reasonable hope from unrealistic hope Suitable for therapist and client in-session

11 Website materials Therapist In-session (or pre-session) briefing Patient Wellbeing fridge magnets Partner Self-guided couples In-session guided therapeutic chronic illness tip sheet Partner tip sheet In-session relationship checklist chronic illness Partner video Provides a videos guided narrative therapy influenced externalisation of the illness and its effects Promotes about a difficult topic Suitable for therapist and client in-session

12 Website materials Therapist In-session (or pre-session) briefing Patient Wellbeing fridge magnets Partner Self-guided couples In-session guided therapeutic chronic illness tip sheet Partner tip sheet In-session relationship checklist chronic illness Partner video Normalises videos distress with checklist of common couple issues (adapted from Gottman 19 checklist) Uses the miracle question to dreams for the future Suitable for therapist and client in-session

13 Website materials Therapist Pre-session background briefing Patient Wellbeing fridge magnets Partner Self-guided couples In-session guided therapeutic In-session relationship checklist chronic illness tip sheet chronic illness videos Partner tip sheet Provides indirect means to show effects of chronic illness on patient s mood Deliberately irreverent tone Partner video Suitable as therapist handout or client download Other chronic illness resources (podcasts, books, websites)

14 Website materials Therapist Pre-session background briefing Patient Wellbeing fridge magnets Partner Self-guided couples In-session guided therapeutic In-session relationship checklist chronic illness tip sheet chronic illness videos Partner tip sheet Basic psychoeducation on chronic illness and relationships; tips for a culture of appreciation Drawn from Gottman Institute materials Partner video Suitable as therapist handout or client download Other chronic illness resources (podcasts, books, websites)

15 Website materials Therapist Pre-session background briefing Patient Wellbeing fridge magnets Partner Self-guided couples In-session guided therapeutic In-session relationship checklist chronic illness tip sheet chronic illness videos Partner tip sheet Actor and clinician talking about common issues of chronic illness and relationships Based on interviews with chronic illness sufferers Partner and research video evidence Suitable for client streaming at home Other chronic illness resources (podcasts, books, websites)

16 Website materials Therapist Pre-session background briefing Wellbeing fridge magnets Self-guided couples Partner In-session guided therapeutic chronic illness tip sheet Partner tip sheet Scaffolded questions to explore how chronic In-session illness is impacting on a couple Living relationship with relationship Based on narrative reauthoring chronic illness checklist videos Suitable for couple download at home Partner video Other chronic illness resources (podcasts, books, websites)

17 Website materials Therapist Partner Pre-session background briefing Patient Self-guided couples Wellbeing fridge magnets Self-guided couples Partner In-session guided therapeutic chronic illness tip Partner tip sheet sheet Basic psychoeducation on chronic illness and relationships; tips for a culture of appreciation In-session Drawn from Gottman Institute Living materials with relationship chronic illness Suitable as therapist checklist Partner video handout or client videos download Partner tip sheet Partner video Other chronic illness resources (podcasts, books, websites)

18 Website materials Therapist Pre-session background briefing Patient Wellbeing fridge magnets Self-guided couples Partner In-session guided therapeutic chronic illness tip sheet Actor and clinician talking about common issues of chronic illness and relationships In-session Based on interviews with chronic Living illness with relationship sufferers and research evidence chronic illness checklist videos Suitable for client streaming at home Partner tip sheet Partner video Other chronic illness resources (podcasts, books, websites)

19 Let s talk about Reasonable Hope.

20 What about hope? What comes to mind when you think of hope? Those are common images and very uplifting, but would Chronic Illness let anyone stay uplifted like that for long? That s where Reasonable Hope comes in. It s far more down to earth. Think sweaty track pants and worn out sneakers. The usual. A butterfly, a rainbow, an undemanding bird that perches in one s soul (Weingarten, 2010, p. 7) Fair point. And the higher you fly, the further you fall Ok. Tell us more Based on the work of Kaethe Weingarten

21 Here s a good place to start Couples hide the feelings and then feel guilty about hiding their feelings. It s assumed knowledge that people should share feelings with their partner. Frustration builds Research and Dr Google confirm It s good for relationships where couples share feelings. But chronic Illness triggers powerful, difficult and socially undesirable feelings in couples Is the relationship strong enough to share even those feelings? Are couples even allowed to feel these feelings?

22 Reasonable Hope for your clients is about relationships Reasonable hope flourishes in relationships: I hope when we hope is a verb Reasonable hope is something we do, not something we have or don t have The five characteristics of reasonable hope make it a more robust concept than hope in general. (Weingarten, 2010, p. 7) knows its dark side Reasonable hope accepts that despair and doubt also exist at the same time is modest Because not everything can be done, reasonable hope settles for something getting done is about the future Reasonable hope reminds us that whatever else happened, the future is still up for grabs

23 Reasonable Hope for you as a practitioner Means taking inspiration from others (Vicarious Hope) Is about noticing your client s resistance to what is unjust The practice of reasonable hope is more a course of action that allows one to follow a path toward a goal than it is a feeling. Hoping does not preclude doubt and despair. Others can help one do reasonable hope, both in imagining the goal and pathways toward it and in taking actions towards the realization of the goal. (Weingarten, 2010, p. 16) Involves remembering that uncertainty is an ally Supports modest expectations for your clients Means finding proxy measures for bigger goals

24 References Gottman, J.M. & Silver, N., (1999). The Seven Principles for Making Marriage Work; New York: Crown Publishing. Weingarten, K. (2010). Reasonable Hope: Construct, Clinical Applications, and Supports. Family Process, 49 (1), 5-25.

25 What s normal in relationships anyway? All relationships have problems. In fact, John Gottman says that choosing a relationship means choosing problems. You simply can t avoid problems in relationships. Here are ten common things that people complain about in relationships and what couples typically seek counselling for (taken from the Gottman 19 areas checklist ). How many of these describe the problems you face in your relationship? 1. We are becoming emotionally distant 2. We experiencing the spill-over of other stresses 3. We keep getting stuck on one or more issues 4. Our relationship is becoming passionless-the fire is going out 5. There are problems in our sex life 6. When disagreements arise, unpleasant fights occur 7. Differences are emerging between us in basic values and goals or in desired lifestyle 8. Very hard events (e.g. violence, drugs, an affair) have occurred within the relationship and the relationship is not dealing with this well 9. We are not working very well as a team right now 10. We are having trouble handling issues of finances How many did you tick? Nearly everyone ticks at least one, most tick at least a few. ALL relationships have problems, not just yours. Source: John Gottman

26 Is it me, you or us? Here is a list of common hopes that people have for their relationships drawn from the work of John Gottman. How easy or hard would it be for you to work towards these hopes that people have for relationships? (1=easy to do, 5=hard to do). Leave blank any item that does not represent an issue for you. I would like us to talk to each other more EASY HARD I would want to receive more appreciation for what I do. EASY HARD I would like it if our lives were less chaotic. EASY HARD I would like our lives to be less stressful. EASY HARD I would like us to have more fun than we do. EASY HARD We don't have enough of a social life EASY HARD I would like us to talk over a major upcoming decision. EASY HARD I don't feel my partner listens to me when I am upset. EASY HARD I don't feel supported in this relationship. EASY HARD I don't feel that my partner is very affectionate EASY HARD Source: John Gottman

27 Is it me, you or us? Or is it the chronic illness? Imagine tonight, after you both go to sleep, overnight a miracle happens. When you wake up the chronic illness is removed from your life, not just cured but disappeared completely from your lives and you don t even remember having it. It s just gone. Now imagine that you want to work on the issues in your relationship. How easy or hard would it be for you? (1=easy to do, 5=hard to do). Leave blank any item that does not represent an issue for you. I would like us to talk to each other more EASY HARD I would want to receive more appreciation for what I do. EASY HARD I would like it if our lives were less chaotic. EASY HARD I would like our lives to be less stressful. EASY HARD I would like us to have more fun than we do. EASY HARD We don't have enough of a social life EASY HARD I would like us to talk over a major upcoming decision. EASY HARD I don't feel my partner listens to me when I am upset. EASY HARD I don't feel supported in this relationship. EASY HARD I don't feel that my partner is very affectionate EASY HARD Even if you knew that chronic illness was affecting your ability to work on relationship issues, how is chronic illness making it easier or harder for you? That s how Reasonable Hope can help. It doesn t say give up, it says check your expectations against your reality. Source: John Gottman

28 Contacts Humankind Website: Contact us: Thanks for listening!

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