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So long as we love we serve; so long as we are loved by others, I would almost say that we are indispensable; and no man is useless while he has a friend. (Robert Louis Stevenson)
Chronic illness touches the lives of our partners, children, parents, siblings, coworkers, and friends. They may want to help and not know how; they miss the person we used to be; they’re frustrated that we can’t do what we used to or at the unpredictability of our lives. They may be full of advice on everything from which herbal supplements will help to what we should or should not eat, or how active we should be. They may emotionally abandon us, refuse to acknowledge our struggles and our fears, or decide they can no longer bear the burden of being our friends.
This talk will explore the impact that chronic illness has on these key relationships and discuss how to make the connections stronger. While clear open communication and assertiveness are important for any healthy relationship, when a chronic illness is added to the mix, those elements become even more crucial. We will explore how the efforts at nurturing these relationships can lead to stronger marriages, more independent children, lifelong friendships, and a more fulfilling, creative and vital life.
I. Chronic illness is a family affair.
A. Relationships are based on “unspoken contracts” B. Need to renegotiate the contracts, make explicit. C. Requires open, honest communication D. Eliminate mind-reading E. Set limits, boundaries F. Assertiveness, ask for what you want
II. Effects on Marriage/Partnership A. Chronic illness has adverse impact on marital quality.
B. Renegotiate the relationship contract 1. Role reversals 2. Confront strong emotions Frustration, sadness, loss, love, compassion, anger, guilt Fear of dependency, for both partners “Is the disability real?” fears
C. Address financial worries 1. Open honest negotiation of the “new” budget is essential. 2. Discussing the problems without blame is difficult, but crucial.
D. Lost dreams
E. Sex, romance and chronic illness 1. Struggles with body image interfere . 2. Protectiveness by withdrawal is common, but problematic. 3. Lack of communication leads to assumptions – usually wrong. 4. Learn new ways to express love and be intimate. a. Planning and timing are important b. There are many ways to give and receive pleasure, other than intercourse.
F. Making it work 1. Grieve the losses 2. Talk to each other a. It’s up to you to convey what you feel and what you need. b. Listen without interpreting (defending, blaming, counterattacking) 3. Avoid overprotectiveness (both directions) a. Overprotectiveness leaves the ill spouse out of important family interaction, and the exclusion filters down to the smallest daily interactions. b. It diminishes the ill person, their sense as a contributing family member, decreases sense of contribution and control. c. Hiding the negative leads family members to believe conflict is not ok. People don’t learn conflict resolution skills, and learn to believe they need to protect and please others. 4. Realize your lives have changed 5. Seek professional help when needed 6. Re-create your life – develop new ways to have fun Don’t stop making plans; make contingency plans. Develop new mutual interests. Allow space for individual pursuits and friendships.
III. Partners need support too
A. Partners are stressed too 1. Jealous of time illness takes and the support you may have. 2. Overwhelmed with added responsibilities, some for which they are not prepared (sole breadwinner, primary parent, cook, laundry person, etc.) 3. They, too, have lost dreams and companionship of the previous form. 4. They have strong feelings, too (loss, anger, exhaustion, worry, guilt). 5. Goals: remove blame, honor their attempts to cope, help them identify, verbalize and accept emotions for which they are feeling embarrassed or guilty.
B. There may be resentment over the lack of equality in household responsibilities. 1. It is so important for the ill spouse to participate in whatever ways they can, to relieve even small responsibilities, in order to diminish resentment. 2. Hire help whenever possible. Solicit help from friends and family.
C. Spouses need to maintain individual interests and friendships. 1. Struggle with guilt 2. No help to partner, if they don’t take care of themselves 3. Negotiate time away from your partner and the family.
D. Dangers of becoming the “caregiver” 1. Dangers of helping “too much” 2. Loss of romantic intimacy if “caregiving”
E. Getting support 1. Talking with and being active with friends 2. Support groups
IV. Effects on Children and Parenting
A. Explain what’s wrong (age appropriate) 1. Without information, children assume the worst case scenario. 2. Let them meet doctors or care providers; don’t force them.
B. Encourage questions 1. If they have facts, they know what questions to ask. 2. They work out their own explanatory model. 3. Give them information on what helps fibromyalgia.
C. Express emotions openly (age appropriate) 1. Your emotional expression is the primary model for your children. 2. As you express emotions and needs, you give your children permission to do the same. 3. Discuss how your household is different than that of their friends.
D. Encourage children to express emotion 1. Fine line between encouraging and forcing. 2. They may not discuss feelings with you, but will with friends. 3. Consider support groups (if available). 4. Don’t be threatened if your child finds another adult confidante. 5. Provide words; use books with facial expressions 6. Children lack intellectual understanding of changes in their parents and parent’s withdrawal. They may misinterpret. 7. They need permission to express abandonment, anger, loss, loneliness, fear.
E. Empower children to be part of the solution 1. You may need their help. 2. They benefit from the family maintaining routines and schedules and from participating in running the household. 3. Expect them to keep up with their chores. 4. Children learn about duty and responsibility, and need lots of praise and acknowledgement.
F. Learn not to be overly protective 1. Not letting them deal with situations they can handle diminishes their sense on control and self esteem. 2. Allowing them to help increases sense of self-efficacy and helps you, too. 3. Tell parents of your children’s friends what you deal with.
G. Remember to have fun 1. Develop new pleasurable activities and find alternatives. - If you can’t travel, you can picnic in the back yard. - If you can’t bike with them, you can play games in the living room. 2. Encourage children to bring their friends home.
H. Realize the “gift” in the situation Children with challenged parent grow up to be independent, compassionate, and competent adults. As Susan Wells says “chronic illness is a gift – albeit one that you don’t want and can’t give back, but that will ultimately teach you [and your children] many important life lessons.”
V. Effect on Friendships A. Educating our friends 1. You’re speaking a foreign language 2. Don’t expect people to understand the medical condition or how it affects you. 3. Requires open communication about how the condition affects the friendship (i.e., need to be flexible, change plans at the last minute, moderate intensity of activity.
B. Friendship circles will change 1. People may be fearful: - catch the illness - more likely: reminds them of their own vulnerability - they don’t know what to say or how to help - may fear your needs will consume them 2. The ill person may not have the energy to keep up as many friendships. 3. Sometimes it’s time to let people go: when you feel you’re doing most of the work to maintain the friendship, gently let it go.
C. Adjusting your expectations 1. Not all people will want all details 2. Not everyone will want to be educated. 3. Sometimes “fine” is an acceptable answer to “how are you?”
D. Treasuring our best friends 1. Friends do not have to see eye to eye on all things 2. Treasure friendships for what they do offer, rather than wish them to be all things. 3. Health problems are only a small part of your close friendships. Stay connected on all the other important levels.
E. To tell or not to tell 1. You are far more than your illness; it does not always have to be the first or most central part of your relationship with others. 2. Invisible illnesses have their own challenges. 3. There is a loss when a friend won’t talk to you about her problems because she feels yours are worse (overprotectiveness). 4. Sometimes we all wish we gained some privilege because of our condition.
F. Handling unsolicited advice 1. “Fixer-uppers” may feel they’ve failed you or that you’ve failed them if you don’t follow-up on their suggestions. This does not make for close friendships. 2. You may reject others’ suggestions with grace, politeness, and wit. 3. The more confident you are about your course of action, the easier it is to accept other’s suggestions with equanimity. 4. Be grateful they care enough to comment. 5. Reassure them you have a competent medical team.
G. Asking for what you need 1. Like our family, our friends are not mind readers. 2. If we fail to ask for help, we deprive friends of a chance to help. 3. You must assume your friends are assertively taking care of themselves too, and will say no when they must. 4. None of us is completely independent. We all need others. 5. You may ask for anything. (You won’t always get it.) People may say no, and you may be pleasantly surprised at their desire to help.
H. Setting limits and saying “no” 1. Overdoing helps no one, least of all you. 2. Overextending yourself, and not being able to follow through, leaves others confused and resentful and you guilty. 3. If you’re not certain of how to respond to a request, your first response can be “let me check the family [my] schedule and get back to you.” It gives you time to assess whether you really can or want to do this. 4. When appropriate, you can say “I’d like to help out; I can’t do that, but perhaps there is something else I could do.” Or “I can’t help this time, but possibly next year,” etc.
I. Taking care of ourselves 1. Women have a hard time putting themselves first. 2. Families feel it’s fine if you take care of yourself, as long as you’ve met their needs first. 3. You must consider the impact on others if you do something and your symptoms then get worse. 4. Don’t expect people to be pleased when you say no or set limits. 5. Family and friends have a hard time understanding your limits, largely because you do, too. 6. Denial gets people into trouble, because they don’t take steps for adequate self-care. You must admit to yourself that you have a condition that you must accommodate. [Quote from A Delicate Balance by Susan Milstrey Wells, Pg 191]
Suggested Readings
These suggested readings either deal specifically with the effect of illness on relationships, or have excellent sections addressing the impact of illness on work relationships, friendships, families and parenting, and intimate relationships. The comments are partly taken from the website for Amazon.com. While some may be difficult to find, most are available new or used from Amazon.com.
Surviving Your Spouse’s Chronic Illness: A Compassionate Guide by Chris McGonigle Henry Holt and Co., 1999
This book describes the emotional and psychological impact of caring for a chronically ill spouse. When one’s spouse is diagnosed with a serious illness, two lives are devastated. The partner is a victim, too. Author Chris McGonigle, who was a well spouse for fifteen years, draws on her own personal experience and on that of the many other men and women whom she interviewed and who spoke frankly to her about what it is really like to take care of a chronically ill spouse. Her honest book reassures readers that they are not alone in what they feel and are going through. The topics covered include initial reaction to the diagnosis; denial; communication; what losing the sexual part of marriage means; anger; violence; parenting; and spirituality. A final section tells where to turn for help. Through the wisdom and compassion of the many voices in the book, readers will learn how others cope and what they themselves can do to survive.
The Chronic Illness Experience: Embracing the Imperfect Life by Cheri Register Hazelden, 1987
This penetrating and inspiring book probes the psychological and emotional aspect of chronic illness and reveals how those who endure adversity ultimately achieve meaningful lives. It eloquently demonstrates that happiness and fulfillment are not exclusive preserves of the healthy.
A Delicate Balance: Living Successfully with Chronic Illness by Susan Milstrey Wells Perseus Books, 2000
Wells characterizes the onset of a chronic illness as the beginning of a journey toward understanding, accepting, and healing, and she organizes her book to help lead the reader on that journey. The first few chapters deal with the psychological stages of illness and the perseverance that’s often needed to get an accurate diagnosis and find a suitable health care partner. Middle chapters detail the search for treatment and the effects of chronic illness on personal relationships and the ability to work. The final chapter offers the optimistic view that chronic illness is a gift—albeit one that you don’t want and can’t give back, but that will ultimately teach you many important life lessons. Yes, chronic illness changes your life, she writes, but such change is not necessarily bad—and having a guide like this can help you through it.
You Are Not Your Illness: Seven Principles for Meeting the Challenge by Linda Noble Topf Fireside, 1995
The author has dealt with her own multiple sclerosis most of her adult life, and delves deeply into her own experiences to share the keys to regaining emotional and spiritual wholeness. She shows that real healing has little to do with the state of the physical body and offers support, skills, and encouragement to those who want to embrace the challenge of living successfully with illness.
In Sickness and in Health: Sex, Love, and Chronic Illness by Lucille Carlton Dell Publishing, 1996
The widow of a Parkinson’s patient shares candid, compassionate advice about how couples can satisfy sexual needs when one partner is physically limited because of illness or accident. Lucille Carlton offers frank information about sexual practices, alternatives to intercourse, and more.
The Fibromyalgia Relief Book by Miryam Ehrlich Williamson Walker and Company, 1998
This excellent book is full of useful advice for those dealing with fibromyalgia, and those who care about them. In addition to information on activity modification, stress management and diet, Williamson includes information on personal relationships and intimacy.
Chronically Happy: Joyful Living in Spite of Chronic Illness by Lori Hartwell Poetic Media Press, 2002
This upbeat, motivational book helps people living with chronic illness create joyful, fulfilling lives. The book is filled with enlightened anecdotes from the author and others, and will bring new hope and joy to those who cope with chronic illness. Lori Hartwell’s stories and words of wisdom inspire readers to embrace a joyful life in spite of their physical limitations.
Chronic Illness and the Family: A Guide for Living Every Day by Linda Welsh and Marian Betancourt. Adams Media, 1996 One out of every ten families will face the challenge of chronic illness within the family. In this compassionate, practical guide, Dr. Linda Welsh recounts her personal story of shattered dreams when her husband was stricken with kidney disease at the age of 38, and tells how she and their two children weathered his illness and adapted to a new, permanent way of living. Connie A. O’Reilly, Ph.D. Licensed Psychologist 503-644-4669
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