Pain Connection will be publishing articles, poems and drawings from their members and families to give the community insight into their lives.
Do you have chronic pain in the neck, waist, leg, or brain?
Living with Someone with Chronic Pain
by Ellen Weiss
My husband's chronic pain began more than four years ago after the removal of a spinal cord tumor called an ependymoma. The hotdog?like growth that was lodged inside the cervical region of his spinal cord had already caused damage to his sensory tracts by the time it was removed, and the surgery, while saving his life, probably added to the damage. After surgery, while still in the hospital, he thought he was having a heart attack ? so powerful was the constricting feeling he had in his chest. But all heart?functioning measurements were normal. Over time, in addition to feeling like his chest was being crushed, new types of pain would emerge ? deep bone pain in his arms, stabbing pain in the middle of his back, and tingling pain in his left leg.
Interestingly my husband's stoicism to pain probably made things worse. In retrospect he realizes that the odd aches and pains he felt for several years were probably harbingers of what was to come ? an unrelenting, searing pain in his neck that led him to demand an MRI. I also can look back and realize that there were signs that I ignored which has only made me super vigilant to his present state. Unfortunately, this has been a source of tension between us over the years and I'm finally learning how to be helpful yet distant, attentive but not obsessed about the pain that is so obviously a part of his and my daily life. One of our long?standing issues concerns talking about his pain. After he got home from the hospital I remember that I wanted to know how he was feeling all of the time and therefore I constantly verbalized my need to know. Months later, exasperated, Jon told me two things that I failed to note myself. One is that I probably could tell roughly how he was feeling by how he looked and acted. This was true. My senses had sharpened since his surgery and I could detect subtleties in his voice, his face, and his body language that did provide cues as to whether he was having a good day or an awful one. The second important lesson is that he didn't want to talk about his pain all of the time because it reminded him how of much his life had changed. When it became clear that the pain in all its variations was only somewhat responsive to pharmacological, physical, and mental interventions, my husband applied for disability ? an emotionally draining process. So now I try to take cues from him regarding if and when he wants to talk about his pain, but it isn't easy. I've discovered that talking about his pain is an opportunity for me to feel that I'm doing something, even if it is only being empathetic and supportive. A particularly difficult subject to stay quiet about is that of pain management. Over the years I have read a lot of information, observed Jon's reactions to stimuli and drugs countless times, and therefore developed my own theories about what he should and shouldn't do. Unfortunately, Jon's pain has proven to be highly unpredictable which makes me want to scream. I have been humbled many times when my hunches do not pan out. Nevertheless, once in a blue moon I do come up with a valuable suggestion. But I've had to learn how to present such suggestions and ultimately leave the final decision to Jon. A final observation about living with someone with chronic pain: Despite everyone's universal experience of pain, I find that most people can't conceptualize what it is like to live with severe pain all of the time, especially when one looks healthy, like my husband. Since I'm the only one who sees how his pain manifests day and night, I often feel defensive when someone comments about "how good Jon looks" or "how well he is doing." "Yes, but....," I reply as I try to provide some kind of reality check. But then I feel guilty for forcing people to face our personal struggles and difficulties. But how would they otherwise learn what chronic pain is really like?Ellen Weiss works on HIV/AIDS issues at the International Center for Research on Women. She is interested in talking with other spouses/partners of people with chronic pain and can be reached via email (firstname.lastname@example.org).