Venting the Pain

When a person is injured, family and friends rally around to offer sympathy, encouragement, and help with physical tasks. Everyone, including the patient, expects that this amount of assistance will only be needed temporarily, and that when the injury is healed, life will return to normal for everyone involved. But what happens when the injury results in longstanding pain and physical impairment? Or what happens when a person is diagnosed with a pain-causing condition such as degenerative disc disease, fibromyalgia, or migraines? If there are no crutches, casts, bruises, or bleeding to indicate that something serious is going on, bystanders usually assume that all is well. One of the most difficult features of chronic pain is its invisibility.

Perhaps you have had the experience of parking in the handicap space, your permit clearly visible through the windshield, to be greeted by an angry shout from a passerby who thinks you are cheating because you don’t “look” handicapped. Even if you walk with a limp and use a cane, if you are young and healthy in appearance, people assume you are faking. One person I know was so fed up with this repeated experience that he took off his shirt to show the accuser the scars on his back from ten surgeries. If this has happened to you, you know how upsetting it can be. Over time, you may become self-conscious and unwilling to spend much time in public.

As difficult as it is to hear false accusations of malingering from strangers, hearing something similar from people who should know better can be devastating. Even physicians can be guilty of not appreciating what it means to live with severe pain. Recently a person with intractable migraines reported that in an initial examination, her new neurologist told her she looked “too good” to have the pain level she was reporting. Another person was told by her attorney that she probably would not be awarded disability income because she looked “too good” at the hearing. This type of reaction is particularly demoralizing if you have worked hard not to impose your pain on those around you. Just because you are not groaning or grimacing doesn’t mean you aren’t struggling mightily to cope.

Over the years I have heard many stories of spouses or children injuring their backs, for example, and having to stay out of work for several weeks while recuperating. During this time, they invariably express a real understanding of what their chronically-pained loved one goes through. They express empathy and praise for the pain patient’s endurance and fortitude. However, when they have recovered and have resumed their normal level of activity, they forget how bad it was for them. As their own pain experience fades, their awareness of their loved one’s pain also diminishes. The longer the pain condition persists, the more everyone but the sufferer relegates the pain condition to the background. Over time, family and friends can become impatient with the situation. “When are you going to get better?” is a question too often asked of people who know that getting better is unlikely and they are functioning at their optimum level.

Another emotional complication of the chronic pain situation is the following vicious cycle: the person in pain does not want to upset the family, so he puts on a happy face, suppresses his feelings, and suffers in silence. Meanwhile, his wife knows he is suffering, because, try as he might, the look in his eyes, his lack of focus, or his sensitivity and irritability give him away. His behavior and his lack of emotional sharing have an impact on his wife, who reacts with concern and anxiety that she is reluctant to express so as not to add to her husband’s suffering. Round and round they go, each with feelings they do not express, each with sadness, anxiety and frustration that can lead to loneliness and a sense of disconnection from each other. If this is a familiar scenario in your life, you can break the cycle by having short, frank conversations about the situation, simply acknowledging the dilemma without blaming. The mere acknowledgement of the dynamic can diffuse the built-up pressure and give both spouses a sense of connection and mutual support. But both spouses also need an outlet outside of the relationship where they can fully express their feelings and gain additional support.

It takes effort and energy to talk through all the feelings and solve all the problems that a pain condition generates. It is important to pick your battles and not waste energy and breath responding to random accusers like the person objecting to your use of the handicap parking space. Such persons should be ignored and their remarks chalked up to ignorance. You can deal with physicians, attorneys, and worker’s compensation commissioners directly by narrating your experience without defensiveness. You can educate them about the complexities of pain by referring them to articles and web sites such as this one. You can remind them that their brief encounter with you does not uncover the full picture of your life. Support groups and chat rooms can offer tremendous emotional consolation as well as practical ideas for you and your family. Individual psychotherapists and counselors can also be very helpful in resolving the many feelings and concerns generated by your pain condition. It is comforting to know that you are not alone and that others not only share your experience but have also found effective ways of coping.

-Michele Gargan, PsyD