Chronic Pain is a Family Affair
Anyone who has dealt with chronic pain for any length of time understands the toll it can take not just on the patient, but also on the patient’s friends and family. Chronic pain is a family affair; it affects every person in the patient’s family in different ways. In my case, I was so very fortunate to have a wife who stood by my side, always ready to help pick me up when I lacked the strength to pick up myself. Unfortunately, this is not always the case. When listening to patients describe how chronic pain has affected their families, it’s not uncommon to hear stories of spouses who simply are unable to cope with how the chronic pain has changed the life they once enjoyed and feel they must leave, or stories of patient’s parents, siblings, or friends placing increasing distance between themselves and the patient because of how the chronic pain has altered their relationships.
In the first year of my chronic pain battle, my left shoulder began losing range of motion very quickly because I was “guarding”, or refusing to move my arm at the shoulder joint due to the pain caused by this movement. I also began losing the ability to grip with my left hand. At one point, I had a difficult time washing my own hair in the shower because I was unable to lift my arm above my head; my wife had to cut any food that required the use of both a fork and knife because I was unable to close my hand tightly enough to grip a piece of flatware. Here I was, a 29-30 year old man, and I couldn’t even cut my own food. We went for more than a year without eating in a restaurant that required me to use a fork and knife due to my embarrassment that my wife had to cut my food.
My chronic pain also left me unable to do many of the chores around our home. I could no longer mow grass or any other type of significant yard work. For quite some time, I had to rest between emptying the dishwasher and folding a load of towels from the dryer due to how these simple activities caused the pain in my shoulder, arm, and hand to spike dramatically, often reaching an 8-10 on a 10-point pain scale. I was even unable to drive for quite some time due to the pain caused from the vibrations of the car driving down the road. Just riding in the car as a passenger was often a painful experience. The most significant change in my life, however, was the sensitivity caused by my CRPS (Complex Regional Pain Syndrome) and the fact that I couldn’t stand being touched on the left side of my body. That meant no hugs, no lying on my left side in bed, etc.
All of these things had a tremendous effect on both me and my wife. We went from being equal partners in our marriage to her being the sole provider and practically the sole caretaker. She worked all day and then usually had to come home to make dinner, as this was almost impossible for me early on after my pain started. This also meant she was my sole transportation, driving me to doctors’ appointments, Physical Therapy, Occupational Therapy, and anywhere else I needed to be taken. I was unable to drive, so I couldn’t even run to the grocery store or other simple errands, which meant all of these things fell to her as well. On the weekends, there was little time for her to rest, as she was now responsible for almost all the yard work and household chores. She also lost most of her social life as she didn’t feel comfortable leaving me at home while she went out; much of her vacation time at work was spent driving me to various medical appointments. One of the hardest changes for us, however, was that I had to sleep on the sofa for months, unable to lie next to her at night, neither of us being able to comfort the other. The only way I was able to sleep was on my right side, with my arm propped on a pillow and against the back of the sofa, but just barely touching it, as too much pressure increased my pain to the point of being unable to sleep.
These changes naturally demoralized me, which then caused tension between me and my wife. The tension was never meant to be directed at my wife, but she unfortunately suffered from it because I was so down and frustrated from not being able to do these simple things I had done for so long. But one of the things I’m most thankful for is that she was able to patiently wait for me to find my way back to the person I was before my chronic pain began. I still can’t do all of the physical activities I did prior to the onset of my pain, but I am still the “person” I was before the onset of my pain. My ability to perform those physical activities was not what made me the person I was; what made me the person I was, and still am, is how I looked at life and interacted with the people around me in my life.
If one of your loved ones is dealing with chronic pain, or if you are dealing with chronic pain, it is imperative that all of you understand this is a family issue, not an individual patient issue. Families must understand that the patient may not be able to do the physical activities from before the onset of their chronic pain: they may visit less often, they may not travel as far or as much, they may not even be able to sit and talk for as long, they may need you to come to them more than before, but the interactions between patients and family, or patients and friends, are still as important, and perhaps more so, after the onset of chronic pain. In addition, chronic pain patients must understand that their family must be able to keep some semblance of their previous life and identity as a way for them to cope with the changes brought on by the chronic pain process. I encourage people to work with each other to find the opportunities that work for both the patient and family members, or patient and friends, and to work on continuing spending quality time together, even if the activities of that quality time must be different now. Those times together will rarely be more precious than as a chronic pain patient and their family and friends navigate their way through the trying times of recapturing or redefining a life after being diagnosed with chronic pain.
