Interstitial Cystitis (IC) & Relationships Webinar This webinar is sponsored by a grant from The Allergan Foundation.

About ICA

The Interstitial Cystitis Association is the only nonprofit charitable organization dedicated

solely to improving the quality of healthcare and lives of people living with interstitial cystitis.

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ICA Update

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More ICA Resources • ICA eNews • ICA website • ICA Online Support Community • ICA Social Media Channels

@ichelp Interstitial Cystitis Association 4

Tacha Kasper, MA, AMFT

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• Masters in Clinical Psychology with emphasis on MFT

• Dedicated to providing therapeutic and coaching services to individuals & their loved ones who are dealing with the emotional impact of chronic pain/illness or cancer.

• Has lived with interstitial cystitis for 13 years

• Triple Negative Breast Cancer survivor (2015)

Nathalie Tacha Kasper, MA, AMFT #96472 Employed & Supervised by Luisa Contreras, LMFT #82977, LPCC #651

Healing Point Counseling

Laura Santurri, PhD, MPH, CPH • Professional background in public

health (PhD in health promotion and a Master of Public Health with a focus on health promotion/disease prevention)

• Primary area of interest is self-management of chronic disease

• Has lived with interstitial cystitis for 20 years

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Purpose of the Webinar

• To describe some of the issues that people living with IC face in relationships

• To provide effective strategies to address

those issues

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What is IC? • "An unpleasant sensation (pain, pressure, discomfort)

perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes”1

– Non-ulcerative: ~90-95% of patients – Ulcerative: ~5-10% of patients2

• Other terms: painful bladder syndrome, bladder pain syndrome, & chronic pelvic pain2

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What is IC? • 4-12 million people in the U.S. have IC

• Anyone can get IC

• The cause of IC is unknown2

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What is IC? • American Urological Association guidelines on

treatment: – Patient education, self-care practices, and stress

management – Physical therapy, pain management, oral

medications, bladder instillations3

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Relationship with Yourself

PRE-DIAGNOSIS What’s wrong with me? Can be a LONG process! DIAGNOSIS Treatments, Medications, Trial and Error NEW NORMAL (CHRONIC) Constant Adjustment & Refining

What’s Your Story?

The relationship with YOURSELF is the FOUNDATION

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Relationship with Yourself Some potential issues: • Challenges every part of your being • Depression • Anxiety • Catastrophizing4 (negative beliefs/thoughts) • Grief & Loss • Judgment & Shame • Self-image and Self-esteem

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Relationship with Yourself Strategies7: • Cognitive Behavioral Therapy5,6

• Relaxation Techniques • Positive Affirmations • Creating a ‘Tool Box’ • Mindfulness Based Stress Reduction • Behavioral Goals • Activity Pacing • Acceptance

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Relationship with Yourself • Be Authentic • Build Resilience • Be Gentle with Yourself • Don’t apologize for good days • No single answer, it’s a mixture • Practice gratitude and positivity

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Relationship with Health Care Providers • The ideal—the patient is a partner with

members of the health care team; care is collaborative in nature8

• Some potential issues: – Limited time with the provider – Lack of communication or misunderstanding

between provider and patient (or among the provider team)

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Relationship with Health Care Providers • Preparation for a visit with a provider:

– What does my provider need to know? • Examples: medications & supplements, allergies, prior

surgeries, medical history, results of prior tests/treatments, ability to afford treatment/medication

– What do I need to know from my provider? • Examples: explanation of diagnostic process and/or

diagnosis, description of treatment options, understanding of side effects

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Relationship with Health Care Providers • Take PART:

– Prepare • Keep track (e.g., voiding or pain diary) • Report (e.g., let your doctor know if your symptoms

have changed) • List (e.g., write down your main concerns & questions)

– Ask – Repeat – Take action

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Relationship with Health Care Providers • Bring an advocate who can:

– Help you remember what was said – Ask questions – Be supportive!

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Relationship with Partner/Spouse

Communication issues9

• Decreased emotional connection • Frequent arguments • Distancing from partner • Financial strain • Feeling overwhelmed • Added responsibilities

Make time to… Communicate clearly Review expectations Create new roles Set boundaries

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Relationship with Partner/Spouse Intimacy & Sexual Issues10 • Reduced libido • Painful sex • Flares • Medication side effects • Self-image

Plan & make time to… Kiss, Touch, & Massage Be Creative & Open Create new rituals Connect emotionally Positive affirmations Try new treatments11,12

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Relationship with Caregivers • Some interesting facts on caregivers:

– About 44 million people in the U.S. are caregivers

– The majority of caregivers (85%) are caring for a relative (and 1 in 10 are caring for a spouse)

– Caregivers spend, on average, about 25 hours a week providing care

– Being a caregiver can have health consequences13

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Relationship with Caregivers • Active listening involves:

– Paying attention – Withholding judgment – Reflecting – Clarifying – Summarizing – Sharing14

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Relationship with Family/Children15 • Lack of Understanding ( Don’t get it!) • Familial strain on all relationships • Changes in roles and responsibilities

• Minimizing & Over Doing it • Guilt • FOMO • Jealousy

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Relationship with Family/Children • Be mindful – Focus on the immediate moment

• Family meetings – Give updates & solicit feedback

• Set Family goals – Communicate as a team

• Set boundaries and clear expectations • Rotate responsibilities – Weekly and monthly

• Acknowledge reality – No one likes this or asked for it

• Plan time for Happy and Positive events

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Relationship with Friends • Living with an “invisible illness” can result in

some issues in friendships: – Friends may not fully understanding the

experience of living with the condition – Social outings can be challenging – Sometimes people don’t know how to act around

those with chronic pain or who are ill – Worry that we are “burdening” others16

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Relationship with Friends • Some strategies:

– Be willing to educate others about the condition (and be open to answering questions)

– Be clear about limits – Be patient with yourself if you need to say no or

cancel – Try not to take things personally – Seek out support groups – Quality over quantity16

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Relationship with Work & Colleagues Common Issues:

• Trying to hide the illness • Perfectionism & “Over Compensating” • Fatigue & problems with stamina • Decline in income / financial stress • Stigma, judgment, fear & shame • Loss of job / disability • Use of all vacation time for illness

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Relationship with Work & Colleagues Strategies: • Know your rights (Americans with Disabilities Act)17

• Disclosure: Employer & Co-workers • Reasonable Accommodations • Stress Management • Time Based Pacing • Handling unsolicited advice • Consider job or career change

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Relationship with Work & Colleagues Disability

ICA Disability Packet Hire a Disability Attorney Be Prepared Long Process Re-Training program Return to Work Program

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References 1. Hanno P, Dmochowski R. Status of international consensus on interstitial cystitis/bladder pain syndrome. Neurourol Urodyn. 2009;28:274. 2. Interstitial Cystitis Association. What is interstitial cystitis (IC)?. https://www.ichelp.org/about-ic/what-is-interstitial-cystitis/. Updated January 9,

2015. Accessed November 26, 2017. 3. American Urological Association. Diagnosis and treatment interstitial cystitis/bladder pain syndrome.

https://www.auanet.org/guidelines/interstitial-cystitis/bladder-pain-syndrome-(2011-amended-2014). Published 2014. Accessed November 26, 2017.

4. Vowles, K. E., McCracken, L. M., & Eccleston, C. (2008). Patient functioning and catastrophizing in chronic pain: The mediating effects of acceptance. Health Psychology, 27(2, Suppl), S136-S143.

5. Iliades, C., MD. (2016, April 28). Cognitive Behavioral Therapy Effective for Patients With Chronic Pain. Retrieved November 17, 2017, from http://www.psychiatryadvisor.com/therapies/cbt-effective-treatment-option-for-chronic-pain/article/492739/

6. U.S. Department of Health and Human Services, Center for Disease Control and Prevention. CDC Guidelines for Opioids Factsheet. Retrieved November 17, 2017, from https://www.cdc.gov/drugoverdose/pdf/guidelines_factsheet-a.pdf

7. Songer, D. (2005). Psychotherapeutic Approaches in the Treatment of Pain. Psychiatry (Edgmont), 2(5), 19–24 8. Bodenheimer T, Lorig K, Holman H, Grunbach K. Patient self-management of chronic disease in primary care. JAMA. 202;288:2469-2475. 9. Leonard, M. T., Cano, A., & Johansen, A. B. (2006). Chronic Pain in a Couples Context: A Review and Integration of Theoretical Models and

Empirical Evidence. The Journal of Pain,7(6), 377-390. doi:10.1016/j.jpain.2006.01.442. Accessed November 17, 2017. 10. Paget, L. (1999). How to be a great lover: girlfriend-to-girlfriend totally explicit techniques that will blow his mind. New York: Broadway Books. 11. Mona Lisa Laser Treatment. Retrieved December 9, 2017, from http://www.smilemonalisa.com 12. The O Shot. Retrieved December 9, 2017, from http://oshot.info 13. National Alliance on Caregiving & AARP. Caregiving in the U.S. http://www.caregiving.org/wp-

content/uploads/2015/05/2015_CaregivingintheUS_Executive-Summary-June-4_WEB.pdf. Published 2015. Accessed December 2, 2017. 14. Hoppe M. Active listening: Improve your ability to listen and lead. Greensboro, NC: Center for Creative Leadership; 2016. 15. Smith, A. A. (2003). Intimacy and family relationships of women with chronic pain. Pain Management Nursing, Volume 4, Issue 3, 134-142.

http://dx.doi.org/10.1016/S1524-9042(03)00030-4 Accessed November 17, 2017. 16. The Princess in the Tower. How to cope when chronic pain affects friends, family & social life. http://princessinthetower.org/how-chronic-pain-

affects-your-friendships-and-what-to-do-about-it/. Published March 14, 2015. Accessed December 2, 2017. 17. Mitschang, T. (2016, April). Working with Illness Patient Rights. Retrieved November 17, 2017, from

https://www.igliving.com/magazine/articles/IGL_2016-04_AR_Working-with-Illness-Patients-Rights.pdf

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Questions?