The Social Isolation of a Painful Disease
Patients with fibromyalgia are captive to pain; isolation only makes it worse.
Posted Oct 19, 2018
We visited B for the first time in three years because of our infrequent trips to the country in which she lives, thousands of miles and several time zones away from us. Emails and phone calls had informed us of her worsening fibromyalgia, but we were not prepared for the almost total isolation imposed by her chronic pain. She has trouble walking because of pain in her legs, and simple movements, such as getting up from a chair or climbing a flight of stairs, are difficult or on some days impossible. Plans to socialize with friends or attend a lecture at the university where she used to be a professor are often canceled, she told us, due to overwhelming fatigue.
Fibromyalgia is a disease that seemed to defy diagnosis or categorization for decades, because no objective measurements, such as blood tests or scans, revealed the source of the symptoms. An advertisement for a drug to relieve the pain of fibromyalgia demonstrates the hidden nature of the disease: A woman tells us that we might assume she is perfectly healthy, because there are no outward signs of her symptoms, yet she is in constant pain.
Fortunately, the medical community has now accepted fibromyalgia as a real disease with multiple symptoms. The most common is pain that seems to migrate almost randomly around the body, affecting soft tissue, tendons, ligaments, and muscle. However, patients may experience severe migraines, sleep disturbances, mood and cognitive disorders, gastrointestinal disturbances, and fatigue.
It is not clear what causes the disease or why pain is felt when there is no visible injury, inflammation, infection, or sign of any other cause, such as cancer. Now researchers are investigating whether the pain is not due to some injury or other disorder within the body, but rather to inappropriate messages from centers in the brain that signal the presence of pain.
One therapeutic approach has been the use of drugs which activate neurotransmitters such as serotonin and norepinephrine to see if they can counteract the pain signals from the brain. But the drugs are not always effective and have their own side effects. Presently, a multifaceted therapeutic approach is advised, incorporating psychological counseling, cognitive-behavioral therapy, meditation, exercise, and reducing sleep disturbances.
However, these interventions are not always successful. Our friend swam and did exercises in the water for two years with no improvement. Now an exercise physiologist trained to work with fibromyalgia patients is available to help her exercise twice a week, but the sessions are often canceled because the intensity of her pain makes any type of exercise too difficult.
Physicians and other health professionals have not been able to find any effective intervention to allow this once-vibrant woman to return to her former active life. She taught university-level courses, turned her research into highly regarded books, and was active in an organization that worked with disadvantaged children. Now, most of her days are spent alone in her apartment with a part-time caretaker. Her friends have dropped away, not because they don’t want to be with her, but because her pain makes it difficult for her to be social. Her hands hurt too much to text or email or engage in social media, and she finds it hard to carry on phone conversations. We don’t know how much our visit cost her in pain. Because we had traveled so far to see her, she never revealed to us, honestly, how she was feeling.
And yet it was apparent that having visitors who made a point of not focusing the entire conversation on her disease had a positive effect. We amused her with some interesting gossip, engaged her in a political discussion that we knew would animate her, shared memories of a time when we lived in the same city, and talked about her research.
Did her pain recede as a result? We never asked, but the energy she summoned several minutes into our visit seemed to indicate that perhaps her pain was not taking over her life at that time.
Sadly, we had to leave her and return home, promising not to wait so long before we made the trip again. But our visit pointed out how a chronically painful disease reduces the quality of life and in particular the loss of human contact. And it is not obvious what can be done. It is hard to spend time with someone who is in constant pain; we don’t know what to say, how to help, or how to understand what they are feeling unless we have had similar experiences. We fear that we may be causing the patient more stress by forcing her to put on a cheerful face and chitchat with us as if nothing is wrong when we all know that she is deeply distressed. Sometimes it’s easier to stay away.
But we shouldn’t stay away. We should not allow the pain and other symptoms, such as sleep disturbances, limit our visits with the patient. If we allow this to happen, then we are allowing the disease to replace our relationships.
When we saw our friend, it was apparent that once we stopped talking about her disease and switched to topics that have consumed our mutual interests for decades, she seemed to focus less on her pain and more on engaging with us in discussing the interests we had shared for many years. Indeed, at some point, we all forgot about the fibromyalgia and simply remembered how good it was to be with each other.
Perhaps social contact should be added to the top of the long list of interventions for this disease. Pain may be present, whether the patient is alone or with others. But when others are around, good conversations, laughter, stories, arguments, etc., may prove an invaluable distraction from the pain. It may not always work; pain may cause social interactions to be delayed or canceled. But it is important to try, because the rewards of seeing a friend or family member relieved of chronic pain, even temporarily, are immense.
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