Chronic Pain in the Family

Chronic pain has been called the “quintessential solitary experience.” While true in the purest sense, in that others cannot truly understand or judge another’s physical pain, those who live with pain know that its impact is profound not only on them but on their loved ones. This, of course, is true for any serious illness. As Betty Rollin wrote in her memoir about her mother’s cancer journey, “Disease may score a direct hit on only one member of a family, but shrapnel tears the flesh of the others.”

Pain and Couples

The effect of chronic pain on the marital relationship (or other committed long-term relationships between couples) is probably the most profound for two reasons:

1. Spouses often spend more time with each other than with anyone else so just the day-to-day contact has a notable effect; and,
2. The intense feelings that partners have for each other (both good and bad) contribute to the significant effect that illness has on a marriage.

There are many ways that spouses are affected and many ways that they react when they or someone they love is in pain. Although it is impossible in an article such as this to comment specifically on any couple’s relationship, there are three important factors to consider when one partner suffers from chronic pain.

1. The frequency and intensity of the pain as well as the degree of disability will have a marked effect on the relationship. Someone with occasional severe migraine headaches may function normally most of the time and the impact on the spousal relationship may be minimal. Whereas someone who has severe fibromyalgia symptoms and is unable to work will likely note that their pain has a more significant impact on their marriage.
2. Naturally there is a spectrum of how well or how poorly both the person in pain and the spouse handle the situation. Research has shown that there are often patterns of behavior for both partners that may positively or negatively impact the marriage and the family dynamics.
3. It is also important to consider what expectations each spouse had and has for the relationship as well as any previous experience they have had in dealing with chronic illness.

All of these things will likely influence how couples respond to living with chronic pain as a component of their relationship.

The more disabled one partner becomes, the greater the impact on the family in general and the spousal relationship in particular. This is why treatment for chronic pain and fibromyalgia is so function oriented. (During my medical training, the physiatrists – doctors who specialize in Physical Medicine and Rehabilitation – would routinely remind us to “focus on function.”)

The reasoning being that if someone continues to function well, despite having pain, his or her life will be much more fulfilling.

Pain and Intimacy

Chronic pain has a marked effect on people’s ability to remain intimate and sexually active. This is an issue for both the person in pain and the well partner. Although intimacy means different things to everyone, it goes far beyond sexual intercourse. Intimacy is the way that couples relate to each other – both physically and emotionally. Sexuality may involve special looks that couples give each other, verbal communication, caresses and finally the sex act itself.

The late and respected social worker Mary Romano described female sexuality in the following manner:

(Note: This definition is equally applicable to male sexuality) “Sexuality is more than the act of sexual intercourse. It involves for most [people] the whole business of relating to another person; the tenderness, the desire to give as well as take, the compliments, casual caresses, reciprocal concerns, tolerance, the forms of communication that both include and go beyond words … sexuality includes a range of behaviors from smiling to orgasm; it is not just what happens between two people in bed.”

Multiple studies have shown that the majority of individuals with chronic pain report reduced sexual interest and satisfaction. In some studies, more than 80% of patients and spouses report significant reduction or elimination of sexual activity. The reasons for this are varied and can be due to a lack of information about how chronic pain and intimacy are related. For example, many people may not engage in intercourse because they fear it will make their pain worse. But, studies show the opposite. In fact, research shows that very often intercourse is followed by several hours of pain relief.

Intimacy, for most people, is a valued and cherished part of their relationship with their partner. In chronic pain couples, this sharing and closeness often goes by the wayside. In order to help regain this special part of a relationship, it is important to explore the reasons behind this loss of intimacy. Sometimes one can do this by having a frank discussion with his or her loved one. Other times, couples find that they resolve intimacy issues with guidance from a mental health professional (e.g., psychologist) who is experienced in treating couples and sex-related problems.

Parents wanting to protect their children may inadvertently fall into a pattern of dishonesty.

Effect on Children

A parent’s illness can bring hardship and crises to the family; however, there are good ways to help children cope with this situation. While most parents understand they ought to be open and honest with their children, they might be unsure what or how much to tell them – how to explain confusing diagnoses such as fibromyalgia, technical medical terms such as trigger point, and in the case of young children, the abstract concept of chronic pain.

Parents wanting to protect their children may inadvertently fall into a pattern of dishonesty. Keep in mind that whether you are truthful with your children or not, they will figure it out anyway. The problem is that what they figure out on their own will likely not accurately reflect the real situation. All of us at times let our imaginations run away with us, but children who have a limited understanding of the world, truly cannot put things in the proper perspective without parental guidance.

If you have fibromyalgia and have not talked to your children, they may be imagining that you are dying. If they carry that thought a little farther, your children may be wondering if they will be given up for adoption. They may think that your pain is their fault and that it may happen to them, too. Your children may be sensing tension between you and your spouse and assume that you are planning on getting a divorce. Or, they may just feel a sense of dread and not really be able to come to any firm conclusions. Whatever the case, having a truthful discussion with them is certainly better than letting them jump to their own conclusions.

What Your Children Need to Know

At a minimum, every child should be told the following:

1. The name of your condition. All children should be told the name of the condition you have as best you can describe it.
2. Why you have the problem. It is important to explain to your children why you have pain. Tell them that fibromyalgia is not contagious and it is not your fault, their fault or anyone else’s fault that you have this condition. If there are things that you do not understand or for which there are not clear answers, then tell them this, too.
3. Details about what you expect to happen now and in the future. Explain that you are getting help from your doctor and that although you may have to live with this for a long time, or even forever, but you are trying new treatments which you hope will help. If there are noticeable side effects, explain them.
4. How it affects your moods and ability to participate. Children need to know what to expect from parents. So, tell your children what you can and cannot do – especially as it pertains to family routines and special occasions. Let your children know that your love and devotion to them is unchanged despite spending time going to the doctor or dealing in other ways with the pain. Explain that your moods are not their fault and that you are working to become emotionally stable. Stress that you are still their parent, despite your condition.

The amount of detail they need to know will vary depending on their age, maturity and ability to understand the explanation. So, although you should always be honest and open with them, the specific details that you give them will depend on what you think they are ready to hear.

Though you alone experience the symptoms of your illness, your loved ones travel with you on this journey. They need your love, devotion and honesty now as much as ever. For the vast majority of people who live with chronic pain, the quality of their lives is not marked by the intensity of their pain, but by how they are able to function despite having pain.

Julie Silver, MD is an Assistant Professor at Harvard Medical School and is the medical director of one of Spaulding Rehabilitation Hospital’s outpatient centers in Massachusetts. She is the author of numerous books including the recently released “Chronic Pain and the Family.”