Disability and the role of family, social, and community support
Humans are social creatures. Our sense of who we are and our place in the world is constantly being defined for us by the quality of our social contexts: inclusion in community, our friendships, being valued and loved, social connections in school and work, and generally our sense of whether people seem glad to see us, to want us around, and to miss us.
We probably look for social cues to judge our value far more than is personally healthy.
Our need for membership in a collective becomes very obvious during acquired health problems and disability, because these experiences present enough threats to personal identity and performance, that even the most individualistic of us needs others and looks outwardly to others for support and validation.However, since illness and disability are seen as countering contemporary values such as prosperity, speed, independence, self-reliance, and productivity, it is not surprising that individuals and their relationships struggle to adapt to this new life terrain that feels unfamiliar.
This article focuses on relationship issues in illness and disability and calls for increased attention to relationship processes as a key determinant of social integration and of social leisure.
To understand how the leisure piece relates to relationships, one needs to step back and understand what's happening in relationships during illness and disability in more general sense, first. What is happening with social leisure and how important is it relative to other things that are going on? Undoubtedly, social leisure is a critical marker of quality relationships, but it is couched in the broader dynamics of relationships as they unfold in people's lives.
This article includes examples of personal accounts and are organized into four psycho-social issues and their impact on relationships: 1) dealing with loss and change; 2) dealing with conceptions of self; 3) addressing adaptations in communication and companionate activity; and 4) dealing with social support in the context of equity. Each issue directly is linked to "social leisure". Finally, we offer recommendations to enhance relationships in chronic illness and disability.
Dealing with Loss or Disability and Change in Relationships
One key need in chronic illness and disability is understanding the impact that the presence of illness and disability has on people's lives. The impact on functioning and lifestyle caused by illnesses such as multiple sclerosis, stroke, and environmental illness, needs to be recognized and addressed, not glossed over or downplayed. The impact encompasses changes in relationship systems: family, friend ships, workmates, and community members. As one clinician in the study indicated:
One of the basic observations that I make is that once a family is touched significantly by illness and disability, their path is altered, perhaps for the full course of their family life. There is not really this question of being affected and then overcoming it, or adapting to it, and getting back to "normal". There isn't such a thing.
Illness and disability can change relationships substantively and the impacts on network structure, function, and quality are surprisingly similar across a broad range of disabling health problems (e.g., cancer, multiple sclerosis, spinal injury). Changes in social network structure typically include diminished size of network, decreased frequency of interaction, loss of friendships, and increased divorce in younger populations.
Changes in relationship functioning include a reduction in: the multidimensionality or range of companionate activity (activities people engage in with others), social space, and discomfort in communication and support processes. Inevitably, relationship quality is affected as a result of the absence of valued relationship provisions and the difficulty of negotiating relationship constraints produced by illness and disability. The impact appears more substantial with degenerative or unpredictable health problems, and/or conditions involving severe chronic pain or cognitive functioning. Nevertheless, the focus groups concurred on the substantial impact of illness and disability on relationships across a large range of chronic illnesses:
I'm sure we've all had friends who just evaporated. Compatriots at work and partners in business and neighbors and what not who shared in the sort of trivialities of the community and they are all gone.
Not only are individuals often confronted with relationship loss, but with the prospect of being rejected:
...people are scared of being dumped, either by the medical profession or ... I think it's also very much with the couples. That they feel they are going to be dumped by the other person ...And there is a lot of talk about fear and anxiety about losing the loved one.
Fears of relationship loss lead to actions that may have been contraindicated by the health problem in order to preserve the relationship. Needs for support may be concealed or obscured by the effort to show competence in order to preserve the relationship:
"I think that (fear of marriage breakup) is a lot of the reason why I try to do more. Because as long as I can do, I will do, so he won't get tired of me real fast, real early."
Illness and disability violate the implicit relationship "contract", the expectations and roles that are present in relationships. Individuals who are ill or who have a disability may perceive that they have changed the conditions of the contract and therefore fear relationship loss. Denial of the illness/disability by significant others, or resistance to the changes that are required to accommodate illness in the relationship, supports this belief, and unresolved issues directly influence the quality of relationships:
"It was with my family that I had the worst problem. It was so hard to get a ride even down here for treatment. Because if they brought me for treatment, they would have to acknowledge that I had a problem. That there was something wrong with me."
The notion that illness and disability are inconveniences in our fast-paced, individualistic culture reinforces this fear of loss. Needs for relationships and support are interpreted as burdens:
It's almost a matter of inconvenience... People seem to be inconvenienced by you. And they take that, it seems to me in our conversation, quite personally.
Teenagers, in particular, acted as if health problems in a parent were a personal inconvenience. Needs of the person with the health problem are obscured by the needs of children who "suffer" from the decreased support they are used to receiving.
I registered for school and I went back. And they all fought me every step of the way. And the teenagers ... They weren't teenagers. Actually, young adults by then. My son was 16 when I was diagnosed. And I would come home to sinks full of dirty dishes. This was my punishment for not being there. comprised of persons with a variety of health problems/disabilities)
As indicated by these focus group accounts, the person with an illness or disability may feel responsible for changing the rules of the relationship and for demanding more resources from the relationship.
Managing a network of friends, family, workmates, and the health care system takes tremendous energy, a scarce resource for persons devoting considerable effort to their health problem. People with chronic illness must sometimes adjust their social network, known as network shrinkage:
"With chronic illness, one of the things that you have to do, with these types of disabilities, is that you have to pare down your friends. There is no sense spending time to save a relationship with someone who doesn't appreciate your strengths and weaknesses, what you can and cannot do. You'll put an enormous amount of effort into it and all they are going to do is lead you down the garden path into situations that are going to make your health worse."
It is ironic that relationship loss and change occur precisely at the time of heightened need for smooth functioning and supportive relationships. Well-functioning relationships are not a frill for persons with health problems. They can mean the difference between social isolation or social integration. Moreover, they will strongly influence whether the individual will be living at home or in an institution. With changes in health care, and greater reliance on family, the need for family support has become even more critical:
"I think family is so much more important to me today than it would have been if I hadn't had a stroke."
Disability and Dealing With Adjustments to Self Identity
Relationships are central to self identity. Personal identity and self esteem often have social origins, stemming from the reciprocal chaining of processes of personal performance and recognition. Typically, illness and disability result in the reassessment of personal identity. Individuals with chronic illness engage in a process of individual and relationship schema reformatting. Who am I? Who are we? What can I contribute to this relationship? What are realistic expectations for my relationships?
I thought, well this is pretty scary, like who the hell am I and who is my wife and what is our relationship? Who are my children and what is our relationship?
Relationships with health professionals, in particular, physicians, dramatically influence self-appraisal:
"I think still there is a great deal of discomfort on the part of physicians and how they relate to persons with disabilities... The only accessible examination table that I've ever seen in a doctor's office is the one in the Rehab. There's a message right there. If they can't examine you, it looks as if they don't want you. Or if there are stairs to the office, how do you get into their office?"
The belief that relationships define the self and that being on one's own is a sign of personal failure adds pressure to be in relationships.
Our culture puts so much emphasis on having a relationship that I feel that in order to be self-fulfilled, I must have one. I should have one. And my disability compounds that problem in a very significant way.
The strong desire for a partner may lead people with chronic conditions to rush the development of a close relationship or to misperceive the willingness of others to have a close relationship and to provide social support:
"I feel that in order for me to feel complete, I want to be married. I want to date. I want to have an emotional and physical relationship ... You strive for that. You work towards that. And that creates problems for you because you put so much emphasis on it, you tend to overcompensate. You tend to try too hard. Or, you tend to misread situations from time to time as well."
These accounts demonstrate that the loss of self identity can be a key issue in coping with illness. As discussed earlier, relationships play a strategic role in how people feel about themselves. Paradoxically, we not only lose ourselves in relationships, we also find ourselves in relationships. Unfortunately, we are often so consumed by our personal agenda that it is very easy to miss cries for validation by persons with chronic illness or disability. Or perhaps we perceive the need as taking up too much free time.
Addressing Specific Relationship Challenges
The negotiation of stresses associated with illness and disability involves clarifying and addressing the relationship issues that were created by illness and disability. These issues are not pathologies or personal functional deficiencies, but are products of changed health circumstances.
Interactions with individuals with chronic illness and disability are often stressful, and people typically avoid them. The scripts we learn in life to manage interpersonal situations may no longer be useful in interpersonal situations that are ambiguous and uncertain. We don't know how to approach people with chronic health problems and feel insecure about interpreting their responses. From the perspective of the person with the illness, relationship tensions stem from the need to disclose the health problem, educating others about their condition and its impact on functioning, and articulating their support needs. Communication issues surround whom to tell, how to tell, how much to tell about symptoms, prognoses, or changes in performance, and, in particular, to explain how it feels. This process is particularly salient in circumstances where there are few visual cues to the disability. Everything needs explaining:
"For the last couple of years, I've been trying to think of a way to express to people what I feel. What it feels like. Because I guess that I feel that I want somebody who doesn't have MS to go through this for one day, or a couple of hours... The actual sensation that your body has or does not have is hard to explain."
The task of informing, educating, and asking for assistance can become quite stressful and tedious, particularly for individuals who do not have a fluent interactional style prior to the illness:
"I was never much of a talker. And my actions were louder than my words. I always rested on my laurels with that. It doesn't work any more. I have to explain so much and negotiate so much more."
For some individuals, social withdrawal may be the least stressful adaptational option, which ends up being counterproductive to support seeking and provision:
"We avoid communication (with family) because of the misinterpretation and misunderstanding."
Individuals in our society, particularly men, have difficulty in tolerating distress or illness in others. Their propensity for wanting to "fix things" makes them feel helpless when confronted with another person's health problem. So individuals with chronic conditions are frequently urged to "get on with it" or "snap out of it", anything except talk about it.
My husband is having trouble dealing with the fact that I'm involved with the group, (cancer support group) and very much involved with the group... he thinks I should go into a severe depression. And this is really morbid stuff. You know, why do I have to talk to women with breast cancer? Like, "Just get over it." And this has been a long time for him to come to terms with.
Insensitive comments relating to less fortunate circumstances are usually given in the name of support, but have the opposite effect. They reflect the "downside" of social comparison:
"My pet peeve is that people are somehow compelled to tell you about their worst, worst, worst friend of a friend who was dying and suffering."
With the presence of chronic illness, communication becomes a risky venture, creating the opportunity to say the wrong thing, even when the intention is support provision. Blows to a fragile identity are readily provided by people with kind hearts, but lack of skill in communicating with persons with health problems.
Reducing relationship tension and finding mutually enjoyable activities were perceived as key factors in the maintenance of satisfying relationships with family, work colleagues, and friends. Efforts made at inclusion (versus avoidance) were seen as an important form of social support provision. Patience and flexibility were required to change traditional ways of performing in every social context, including family life, leisure, sexual intimacy, and work.
In order to have a relationship with an ill or disabled person, flexibility is absolutely essential. You must be flexible.
Activities had to be organized to accommodate for facility accessibility, transportation, increased support needs, and symptoms, including diminished energy. A major constraint was fatigue:
"There just comes a time when you say "Okay, I've seen enough of you people, go home." Your fatigue has hit a point where you don't want to be sociable any more. I don't want to put a strain on a relationship, but it (fatigue) will always affect a relationship with your family and spouse."
Loss of cherished companion activity, the focal point of valued relationships, in some instances, was difficult. The choice between sacrificing social leisure or exacerbating a health problem is stressful:
"At first it was really tough getting used to what I could do physically and what I couldn't do. And I think my active lifestyle had a lot to do with that because I was involved in sports .... Like friends have asked me, "Would you like to go snow-mobiling?" Well, sure I would love to go snow-mobiling. But I know if I hop on a snowmobile with friends of mine, that just the bumping is going to break my rear end. So I'm saying to myself, "Well, I'm not going to do that because I'm not going to jeopardize my job and end up in bed for 3 months just for an hour's enjoyment going snow-mobiling with some friends." So these are some of the decisions that you make, that you have to make."
There was also considerable tension regarding how much to expect family and friends to adapt their agenda and routines:
"We've all given up things. We know that we cannot do everything that we did pre-MS as far as entertainment and enjoying the family and all that. Those of us who are married, a lot of times our spouses will .... We're almost holding them back. My wife loves to dance and I'm not real good at the polka any more .... People would invite me somewhere, and I got so depressed because other people could dance and I couldn't. So I decided to stop going to those functions."
Many participants had relinquished or substantially reduced sexual activity as a function of their health problems. My sex life is "What is sex?"
They reported diminished feelings of sexual attractiveness, exacerbated by the perceived lack of interest from partners. Perceived rejection occurred at a time of increased need for love and social validation.
We all need to be loved and cared for. When I was discharged and went home, I couldn't believe that my wife didn't want to have anything physical to do with me ....that is a real shock .... You're dying to be loved, and to love, and it isn't there. So that is a very difficult part of a relationship for people who have disabilities.
"The workplace. The impact of relationship tensions on illness/disability was apparent in attributions for quitting work. Although some participants in the focus groups were employed, most had stopped working as a result of disability. There was a strong desire among many participants to maintain meaningful activities, but with reasonable performance expectations. Many work environments were not flexible enough to accommodate performance changes of people with chronic conditions who were now a burden to the system. Social support provision in the workplace was a key factor in the decision to continue or to retire."
"I worked in an extremely busy office where it's just go from the moment you step into the door until you walk out. And when you're not there, it puts stress on everyone else because everyone else has to fill your shoes. So you get guilt feelings as a result of not being there, and wanting to be there. And you get ... odd comments when you do return to work in relation to, "Well, we were really busy while you were gone, or, "I had to do this and this for you while you were gone." So it did not help our relationships at work at all. I tended to withdraw from work more and more as time occurred, talking less to my peers, and interacting with them less."
Confronting Social Support
Social support is tied intimately to issues of reciprocity and equity. Perceptions of fairness about social support expectations and role delegation in the process of support mobilization are influenced by individual, relational, contextual, and situational factors e.g., gender. It is generally believed that women are more competent in dealing with illness than men, and that dealing with illness is a woman's role. Women who are ill are often more attentive to the well-being of others, than are men with the same illness. Women seem to put more effort into support mobilization for the benefit of others and their relationships than in meeting their own needs. Illness seems to push women toward more traditional "service" roles.
Participants described considerable awkwardness in giving and receiving support. They reported that although people could be helpful, the process of support provision often misfired. Issues that had to be negotiated in relationships included: fairness and reciprocity, obligation versus desire, expectations regarding performance, over-protectiveness, and the stress of asking for help. There was an awareness that increased need for support markedly altered the balance of power. Whereas prior to the illness, the relationship may have enjoyed a comfortable give-to-take ratio, this balance had now been upset. Expressions of distress sometimes needed to be censored so as to avoid straining the relationship.
Maybe before you weren't an individual who needed to depend on others. And now, because of your disability, you have to. And so in order for you to survive, you have to swallow your pride, and you ask for the help and the support of people who have always been around you.
Long-term needs for support require continuous negotiation around equity issues and support roles within friendships and family networks. The closest family member too often is left with overwhelming responsibilities for the well-being of the person who is ill. This circumstance also overwhelms the relationship, revealing the important interrelationship of social support mobilization and relationship quality. Respondents in the focus groups also expressed a desire to be useful to others, and not identified solely as a person who is continuously needy:
"Usually you go to a minister with your problems ... but I have a minister coming to me, and this minister has prostate cancer. And I was able to advise him. Like, "Tell me the fears that you have." He and his wife spent from 6:00 when they came until 10:00 when they left there talking about cancer, prostate cancer. And he was much more relieved when he left there. He had a living example of someone who had gone through it. So I did well advising him and listening. And I felt good after."
Efforts to understand loss and change in illness and personal identity issues, and to act on adaptations needed in communication, activity, and equity in relationships will all contribute to relationship quality regardless of the context (family, friendship, work, and leisure, health services, etc.). Establishing a new set of commonly accepted relationship rules and increased competence in addressing the issues that have been highlighted would go a long way in facilitating relationships. Such action takes time, flexibility, creativity, and a commitment to the maintenance of quality relationships.
Implications for Programs and Policies
Persons with chronic illnesses, researchers, and clinicians gave fairly straightforward, consistent messages about strategies to facilitate relationships in the context of illness and disability:
"Communicate the importance of relationships. Inform the general public about illness/disability and their impact on quality of life, and increase awareness about the linkages between relational well-being and the quality of life of persons with health problems. In other word, relationships play a key role in how society copes with illness. This dialogue should occur in the general population as part of the investment in good relationship systems, through carefully designed illness/disability and relationships education programs for schools, churches, and the media."
Attend to specific issues. Skills at identifying and acting on relationship issues must also occur in the context of specific experience of illness as a part of the "treatment" regime. This process can occur in health care facilities through family education / counseling process and specifically designed support sessions for patients and families and also in community support groups, leisure services, etc.
Attend to roles and responsibilities. Increase dialogue about personal and shared roles regarding the presence of illness in the family, workplace, and community. A key issue surrounding relationship quality is responsibility. How will this illness be dealt with and by whom? Equitable distribution and negotiation of roles and cooperative problem solving are extremely challenging, even in families or other social units where there is a communal approach to problems. Social workers, leisure professionals, and other health professionals can play a supportive role for families trying to sort out these issues. Again the question of role and responsibility (i.e., what services can a family turn to?) needs to be clarified.
Increase relational competence around illness. Individuals need to know how to communicate more effectively about illness and disability. People in families, work settings, and communities need to know how to provide effective community support and social leisure and to learn strategies regarding adaptation and inclusion. They need be able to negotiate adaptation for various relational contexts, including work, family, leisure, community, and health care.
Share stories and strategies. Individuals with a chronic illness or disability and family members need license to discuss relationship issues and to share relationship stories and strategies. This process can occur in a variety of venues including informal dialogue, individual and family counseling, leisure counseling, and support groups. Models of successful relationship adaptation need to be shared.
Public policy, disability rights, and its linkage to relationships in chronic illness must be examined. Services such as leisure services, home care, housing , work adjustment programs, physical accessibility, and transportation directly impact the quality of relationships.
Two key factors will be very influential in implementing these actions: commitment and the place of relationship issues in the health services.
What is the meaning of commitment when a family member, friend, or employee has a chronic illness? Commitment is a complex concept involving social obligation, relationship history, relationship rules and roles, degree of attachment, relationship expectancies, and other roles and commitments. The nature of one's commitment to provide support in the context of illness is crucial. Concomitant with the relaxing of societal rules about commitment to relationships, people are left to negotiate their respective roles and methods for support mobilization in illness.
In a poignant "letter to the editor" in response to an article on care-giving, Charlwood speaks of the time and effort required to understand his wife's capabilities (early-onset Alzheimer's) and the direct impact of his attention on her physical and emotional well-being. One is struck by the guilt he expresses when he reduced his involvement with his wife because of increased work demands. His letter highlights the meaning of commitment and the efforts required to be supportive when a partner has a chronic illness. What is a fair commitment for a family member or friend? This difficult question requires family and public debate.
Relationships in Health and Human Services
The prevalent acute care model does not accommodate the stresses of chronic health problems, including relationship issues. Relationship issues often fall through the cracks. Health and human service professionals, including leisure service providers need to be more aware of the fact that chronic illness/disability is a relationship issue and examine how relationship issues feature in their services. There were numerous accounts from both ill persons and clinicians about the lack of preparedness of "professionals" to address the relationship and support challenges of illness and the importance of a family systems approach to illness.
Health and human service professionals can facilitate discussion of relationship issues in the social network, in support groups, and in leisure counseling Often members of support groups increase their general level of support through group involvement but the level of support received from their family, friends, or work mates is lacking. Support groups could feature relationships with family and friends, at home, school and work, more systematically in their discussion. Relationship protocols with tools for identifying and addressing issues in illness are needed.
Disability, Relationships and Social Leisure
It is easy to be drawn into the compelling stories of the drama of illness and disability, the active treatment phase, the near death stories, etc. In a review of a recent book on coping with stroke, Drainie admits that "the crisis portion" of stroke survival was a compulsively readable story, but that portion on living with a chronic illness/disability, including the acceptance and adaptation in every aspect of life, was "tougher slogging". She realizes, however, that this latter portion is the primary story of chronic health problems.
Even as the reader allows these negative reactions to surface, however, awareness dawns that this is what disabled or special needs people have to put up with everyday. As humans we are all fascinated by the high drama, the great tragedy that strikes someone low, but long boring aftermath of a life of daily struggle is something we'd rather ignore.
For persons with chronic illness and/or disability, everyday relationships and support processes are central to understanding the meaning of illness, but the particularly compelling portions of this story are the commitments and successes in re-negotiating relationships. With relief from unrelenting dependence and burden, one can experience the challenges and rewards of engaging in interdependence. Illness and disability do not merely comprise a sad person's story, but an opportunity for intimacy and collaboration in relationships - an opportunity for community in the truest sense.
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