Building & Maintaining ConnectionsDr. Mary-Frances O’Connor, PhDClinical Psychologist, UCLA

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What We’ll Cover

• Identify challenges to building and maintaining social connections

• Describe what you can do to prepareand respond to various situations

• Offer strategies that allow you to:

– create new relationships

– thrive in your current relationships!

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• There are physical and emotional challenges

– Your social support network can help you meet them

– Many people also report personalgrowth

• Disclosure—you are in control

– Imagine you are surrounded byconcentric fences

– How and when you let people in willbe 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.

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Bring People Along on Your Journey…

• Need to educate friends and family about the disease and your MS

• Let close friends and family helpyou manage the stigma ofsymptoms

– No need to over-emphasize orunder-emphasize symptoms

• Remember that this is an

adjustment for them, too!

• Silence doesn’t mean people don’tcare—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.

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…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 serviceengagement

– Animal shelters

– Charity board member

– Reading to kids or the blind

• Book clubs, cooking classesand travel clubs

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Managing Your Connections

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Balance Support Networks

• Balance the negative with the positive

– Don’t feel bad airing your negativethoughts or feelings

– Just remember to say positivethings, too

– Hearing the difficulties is easier forloved ones when combined withaffection, gratitude, compliments

– The reverse is true as well—askyour partner/friends to do the sametoward 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.

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Balance Support Networks

• Balance support with additionalresources

– Friends and family are caringand supportive

– Speak with your doctor to helpwith depression, anxiety, angerand low motivation

• Communicate: let friends andfamily know when you need helpand 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.

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Tips for Building & Maintaining Connections

• Have a “Plan B” for socializingwith friends and family

– Having take-out instead of cooking

• Enjoy roles where your MSdoesn’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 forwhen people ask what they can do

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More Tips for Building & Maintaining Connections

• Use “support groups” to connectwith others who know whatyou’re going through

– Seek out the right fit for you!

• Get involved in your MScommunity

– There are many events every year in cities nationwide including Bike MS and Walk MS events

• Set goals and achieve with the total you!

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Time to Act!

• Seize the day—join a group orstrengthen a connection today!

• Useful resources– National MS Society

(nationalmssociety.org)

– Local MS Chapters

– MS LifeLines®, a free educationalresource 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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