1. Building & Maintaining Connections Dr. Mary-Frances O’Connor, PhD Clinical Psychologist, UCLA

2. 2 What We’ll Cover Identify challenges to building and maintaining social connections Describe what you can do to prepare and respond to various situations Offer strategies that allow you to: – create new relationships – thrive in your current relationships!

3. 3 There are physical and emotional challenges – Your social support network can help you meet them – Many people also report personal growth Disclosure—you are in control – Imagine you are surrounded by concentric fences – How and when you let people in will be different for different people Socializing is energizing – Don’t cut out having fun when you have fatigue – Learn to modify activities, rather than stop them Social Support for the Challenges Ahead Pakenham, K. I. (2007, March). “The Nature of Benefit Finding in Multiple Sclerosis (MS).” Psychology, Health & Medicine, 12 (2), 190-196.

4. 4 Bring People Along on Your Journey… Need to educate friends and family about the disease and your MS Let close friends and family help you manage the stigma of symptoms – No need to over-emphasize or under-emphasize symptoms Remember that this is an adjustment for them, too! Silence doesn’t mean people don’t care—you can’t jump to conclusions Grytten, N. and Måseide, P. (2005, September). “`What is Expressed is not Always What is Felt': Coping with Stigma and the Embodiment of Perceived Illegitimacy of Multiple Sclerosis.” Chronic Illness, 1 (3), 231-243. Grytten, N. and Måseide, P. (2006, September). “`When I am Together With Them I feel More Ill.' The Stigma of Multiple Sclerosis Experienced in Social Relationships.” Chronic Illness, 2 (3), 195-208.

5. 5 …and Add People Along the Way Leisure activities – Charity walks and rides – Non-competitive athletics (e.g., recumbent cycling) – Parks and recreation programs Volunteer/social service engagement – Animal shelters – Charity board member – Reading to kids or the blind Book clubs, cooking classes and travel clubs

6. 6 Managing Your Connections

7. 7 Balance Support Networks Balance the negative with the positive – Don’t feel bad airing your negative thoughts or feelings – Just remember to say positive things, too – Hearing the difficulties is easier for loved ones when combined with affection, gratitude, compliments – The reverse is true as well—ask your partner/friends to do the same toward you Kleiboer, A. M., Kuijer, R. G., Hox, J. J., Jongen, P. J.H., Frequin, S. T.F.M., Bensing, J. M. (2007, January). “Daily Negative Interactions and Mood Among Patients and Partners Dealing with Multiple Sclerosis (MS): The Moderating Effects of Emotional Support.” Social Science and Medicine, 64 (2), 389-400.

8. 8 Balance Support Networks Balance support with additional resources – Friends and family are caring and supportive – Speak with your doctor to help with depression, anxiety, anger and low motivation Communicate: let friends and family know when you need help and when you don’t! Mohr, D. C., Classen, C., Barrera, M. Jr. (2004, April). “The Relationship Between Social Support, Depression and Treatment for Depression in People with Multiple Sclerosis.” Psychological Medicine, 34 (3), 533-541.

9. 9 Tips for Building & Maintaining Connections Have a “Plan B” for socializing with friends and family – Having take-out instead of cooking Enjoy roles where your MS doesn’t interfere – Volunteering, leisure activities, groups and clubs Comment on genuine positive and upbeat experiences to your loved ones Ask for help when you need it – Keep track of things that would be helpful for when people ask what they can do

10. 10 More Tips for Building & Maintaining Connections Use “support groups” to connect with others who know what you’re going through – Seek out the right fit for you! Get involved in your MS community – There are many events every year in cities nationwide including Bike MS and Walk MS events Set goals and achieve with the total you!

11. 11 Time to Act! Seize the day—join a group or strengthen a connection today! Useful resources – National MS Society (nationalmssociety.org) – Local MS Chapters – MS LifeLines ®, a free educational resource sponsored by EMD Serono and Pfizer (mslifelines.com) – Real Talk. Real Answers program Web site (realtalkrealanswers.com) – Search for virtual opportunities too!

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