Like most chronic conditions, persistent pain takes a toll on family members, friends and support systems. However you define family, chronic pain changes the dynamics within the family. Daily routines may change because the person in pain may no longer function in the manner he or she used to, which increases the demands on other family members. Family members may experience caregiver fatigue. Every family member may experience increased stress and feelings of guilt, sadness, fear, anger, and anxiety.

Initially, family members may rally around the person in pain, offering to help and taking on extra burdens. Eventually, after months and even years of shouldering additional burdens, family members may be resentful and angry. After months and years of living with chronic pain, you may feel guilty or have a sense of shame, which can lead to anger and withdrawal from the family. Relationships need attention and care in a situation that involves chronic pain or illness, but relationships do not have to be a casualty of pain. There are steps you can take to minimize the deterioration. Minimizing damage to the family is vital to maintaining your support system and living well with pain.

Mark Disorbio, Ed.D., is a licensed clinical psychologist and is the president of Integrated Therapies, founded in 1985. Integrated Therapies provides multidisciplinary treatment for patients with delayed recovery from chronic pain. Dr. Disorbio has conducted extensive research in the area of chronic pain and is the co-author of the Battery for Health Improvement-2 (BHI-2) and the Brief Battery for Health Improvement–2 (BBHI-2). These internationally recognized psychomedical tests evaluate psycho-social and medical factors related to injured patients with chronic pain conditions. These tests are also used as outcome measures for medical procedures and treatment. He received his doctorate in counseling/clinical psychology from the University of Northern Colorado and has spent most of his career diagnosing and treating patients with psychological factors related to medical conditions. Dr. Disorbio is a diplomat in forensic medical psychology.

JL is Jennifer Lobb
MD is Mark Disorbio

JL: What are some of the traits of a healthy family?
MD: Healthy families have a balance between support and encouraging independence, so that each family member has a role in the family where they are encouraged to have responsibilities and work with the family. There’s support both emotionally and financially from the parents, but as children get older, there’s a systematic movement toward learning how to care for one’s self. When we come into the world as infants, we are totally dependent on a parent for survival. Parents are there to provide everything for the child — to feed, to love, to set boundaries and limitations, and to teach independence. It’s a move from attachment to separation — it’s a progression from being totally attached to being independent. Within the family, there is a balance of feeling secure and moving toward independence.

A healthy parent is one who has a sense of being able to provide that security and comfort and provide developmental tasks that help the child learn boundaries, establish a healthy sense of self, and become more and more independent until they can take care of themselves.

JL: How does pain or chronic illness affect the family?
MD: The parent who is in pain, whether it’s the mother or the father, no longer has the resources to provide the security and comfort nor the tolerance to help set the boundaries. People in pain tend to become easily angered, and then they feel guilty. This often causes the child to worry about the parent. The child not only worries about who is going to meet his or her needs if the parent is unable, but the child also wants to do things to help the mom or dad feel better. Instead of it being the parent caring for the child, the child engages in caretaking, which isn’t age-appropriate. It’s a difference between whose needs are being met — and there’s a role reversal. There is chaos and stress in the family.

Most of the time in our culture, both parents have to work to survive. Pain starts to impact the family financially as well because a parent may have difficulties staying at a job or they may have stress because they are not able to function as well and then they lose their job. This financial pressure often causes problems in the spousal system. The parent who is not injured or does not have chronic pain has to pick up more responsibilities at home, so they’re now working at their job and have to come home and do most of the responsibilities at home. This shifting of responsibilities in the spousal unit is in disequilibrium, which creates more stress for the healthy parent and also creates a great deal of guilt and shame and anger for the person in pain because they feel badly that they are not able to help in ways that they once did.

These altered roles affect both mothers and fathers, but I’ve found it’s especially difficult for mothers who have young children and are extremely upset that they can no longer physically pick up a child or play with them. For fathers, it’s especially difficult for them when they can’t play with their children or engage in activities that kids want to do with their parents.

The family is then in a dilemma because no one knows how to rectify this type of situation until they can stabilize the pain condition.

If you take it further, in the larger support system, often what happens is the social support outside of the family — friends, co-workers, and other relationships — those relationships can start to minimize and shrink. People don’t know what do with the person in pain, so the person in pain may become more depressed and shrink from social contact. The problem is, this puts more pressure on the family because the social network is no longer in place. Believe it or not, one of the greatest areas of social support most of us have is at work because, if you work full-time, you spend the majority of time around your workmates. We found, in one of our studies, it’s different when you have pain and go to work compared to when you are not able to work. At work, you can measure how much information you share whereas at home, you let your hair down. You don’t share every detail with co-workers, and there’s a sense of control in that. Always keep in mind that the more that you help people within a family or work context to feel empowered to share or not share, they feel more in control. People with pain feel out of control and often misunderstood because they don’t have an amputation, they don’t have a cast — they may look good, but they don’t feel good.

JL: What role does guilt play in chronic pain?
MD: Guilt plays a large role in this cycle. The person in pain sees that — not only does the other spouse have to take responsibility for the activities for daily living — but the kids are doing certain things that they wouldn’t normally be doing because they have to. So the person in pain feels a great deal of guilt.

One of the first things the person in pain has to do is recognize that he or she feels guilty and acknowledge that this is not an uncommon situation — they are not the only ones in the world who feel this. This happens quite routinely when an imbalance starts to occur.

Second, it’s important to begin to find resources for effective pain intervention so that the person in pain receives proper diagnosis and treatment from qualified professionals who understand pain disorders.

The third thing is to begin focusing on functional restoration and reducing self-limiting behavior. Self-limiting behavior is the type of behavior where the person in pain thinks, “I know I can’t do this because it will cause me more pain.” This is a natural reaction, however, there’s a difference between something hurting and something causing damage. In combination with proper treatment, a person can systematically begin trying things to see what they can and cannot do. They have to start creating a more realistic assessment of what they can do. Part of that is learning the difference between “Is this going to hurt?” and “Is this going to hurt me?” They begin to realize the value of engaging in activities even if it’s going to hurt — if they can pace their activities and do more, they’ll feel better about themselves and reduce the guilt they feel.

JL: How can you communicate to younger children who may not understand what the parent is going through?
MD: That’s a very difficult thing to do. Children younger than six or seven years old have a hard time comprehending — they just know that mommy or daddy is sick. I think what’s important to communicate to kids is that mommy or daddy is sick and sometimes mommy or daddy has bad days — but that mommy or daddy is working on getting better and that the parent hopefully will get better. Children, especially younger children, feel like maybe the parent is going to go away because of an illness, and parents need to try and help them understand that mommy or daddy isn’t going away. Parents need to reassure them. With older children, it’s best to sit down with them and explain, “This is the way it is,” and “We understand that you need to play with your friends or do the things you like to do, but there may be some things you can do to help the family.”

If the person in pain becomes intolerant or irritable or has an outburst, it’s important to tell the spouse or child, “I’m not mad at you, I’m just hurting and feeling bad right now.” It’s important to clarify to the children some of it is their own impatience and not the child, because the child can start to think, “Well, I’m bad,” rather than “Mommy’s having a bad day.”

Communicating is vitally important to maintaining healthy relationships. You may have had good communication skills before pain, but pain can deteriorate those as well. As the person in pain, you get tired of having to talk to people about it. Their families get tired of talking about it. Both want to have normal conversations where they don’t talk about their conditions. You have to be able to balance between communicating difficulties related to your condition with not talking about your condition and having some normalcy. It’s a really hard balance.

JL: What are some warning signs that things aren’t going well in the family?
MD: Some warning signs include severe feelings of guilt in the person in pain and escalating anger and intolerance from the uninjured spouse, especially if he or she is frustrated and communicating that the person in pain isn’t really trying or the pain is all in their head. There may be more fights and disagreements between partners. Some other signs are kids beginning to act out or be overly worried about the parent, despite reassurances.

Where you get in real trouble is when the pain condition starts to deteriorate the family system. Picture the family as circles within a large, all encompassing circle. In a healthy family system, you have the parents, together as a united front, at the top in a circle. Then you have a line that connects to the kids below, with a sibling subsystem. All of this is within the larger family circle. Either one of these systems may start to fragment and become maladapted — for example, in the sibling subsystem, the kids may start to bicker more, act out or rebel. In the spousal system, one of the parents may disengage and the parents no longer present a united front. Then the kids start working the parents — in what’s triangulation, where the kids start pitting one parent against another. For example, the injured parent may try to overcompensate because of the guilt he or she feels. He or she may slide on boundaries and be inconsistent. In turn, this may cause the other parent to become angry and tougher on the kids. This creates a schism between the parents and you end up with different coalitions and triangles within the family. Boundaries break down and daily routines become disrupted. For example, the parents may have had a consistent bedtime and routine and all of a sudden, bedtimes no longer are enforced and then all kinds of conflict occur between the spouses because of the inconsistency. Often, pain conditions can create inconsistencies in boundaries. This creates chaos, which increases stress, which increases pain and reduces function.

JL: What about in a single parent situation?
MD: I think one of the biggest problems in a single parent situation is that there’s no spouse to rely on to do more things. Single parents have to look to external support, such as their own mothers and fathers, siblings, aunts, uncles, or friends. It’s positive to have support from these people, but this puts pressure on these other relationships. Where it’s the most difficult is where you don’t have that added support. For any single parent, whether you have pain or not, you have to go to work to support your family. All the responsibility is on you. If your kid is sick, you’re the one who has to pick him or her up. If you’re in pain, you have added pressure on your job and financial situation because of your limitations in addition to your family obligations. As a single parent, you have to find support from your extended family, from your community, like your church or synagogue, for example, and from friends. The most important thing for a single parent with pain is to find support to assist them during the time they are in treatment until they can get to a point of being more stable. Stress exacerbates pain when you have an intact family unit, but when you have a single parent, it puts even more demands on that person and it makes it hard for people to recover because they are always worried and uptight, bracing and angry — all those emotional factors that affect pain.

JL: Where can you find a family therapist who understands pain?
MD: I think what you need to do is seek a mental health pain specialist, a psychologist. Most pain psychologists understand the impact of family on pain conditions and the impact of pain conditions on the family. If there’s no one like that, I would recommend they find a licensed marriage and family therapist who understands family systems. You need someone who can look at this in a systemic context — pain affects the whole system. The whole is greater than the sum of the parts, so you need to have a therapist who is dealing with all the players, not just the injured person.

JL: How can you determine if a therapist is the right fit for you and has experience with your situation?
MD: Ask yourself if you feel comfortable with the therapist. Does the person convey a sense of caring and concern for your situation? Do they have an understanding of and respect for each member in that system? It’s important that no one feels blame. It’s important to determine if everyone in the system feels understood. Is this therapist helping everyone to feel understood? Can the therapist help each of you learn what your role is? Can he or she help you set boundaries?

JL: What can the person in pain do to help family members deal with his or her situation?
MD: I think one of the things they can do is to make determinations as to what kind of information about their pain and the functional limitations is appropriate to share. What can they share with their kids and their spouses so that they’re not complaining? They also need identify and communicate, “Here’s what’s helpful to me in regards to encouraging me and supporting me.”

There are families that enable and families that disregard. Either direction is not good. In simple terms, if the person in pain says, “I’m going to get a drink,” and the family member jumps up and says, “No no, I’ll get,” the person in pain needs to be able to say, “That’s really not helpful to me. I need to be able to do things.” A healthy spouse might suggest, “Let’s go for a walk.” A healthy spouse encourages activities. It’s also important in situations where the family members think the person in pain is “working it,” that the person in pain communicates, “You know, that’s not helpful to me to have you disregard my situation.” When you have either one of these extremes, that’s where a good pain psychologist will have the family come in for a meeting for psycho-education about pain or have the spouse to come in and talk about frustrations and ways that they can be of help and have a clear sense of how it’s affected them.

JL: What can family members do to support the person in pain?
MD: They need to find out where they can be supportive instead of enabling; they need to be understanding instead of disregarding.

JL: Where should families seek therapy?
MD: First, if there’s an opportunity to identify a mental health specialist who understands pain, they should engage that person, because that person understands the family in the context of pain. Ask your pain specialist if they can refer you to this type of specialist. Another option is to go to your church — often churches have counselors who have backgrounds in treating families. Third, you can seek a qualified family therapist to help deal with the chaos and disintegration of the family system.