Pain Times Two: Family Life When Both Parents Have Chronic Pain
By Kristen Counts
When one member of a family experiences chronic pain, the entire family is affected. In my family, two people are coping with pain on a daily basis—my husband and myself.
I do not know any other young families where both adults have chronic pain. However, I know that we must not be alone in this. My husband works many hours at his job. I have my part-time freelance writing and oversee most of our daughter’s care. It is probably the fatigue that is the most challenging. Finances can be a bit challenging as well.
issues that many other families struggle with. However, I think that there are
a few notable differences.
We have been married for 16 years, so I think it is safe to say that we are coping and finding our way. I was diagnosed with fibromyalgia at the age of 27. The American College of Rheumatology offers this brief definition of fibromyalgia: “Fibromyalgia is a common health problem that causes widespread pain and tenderness (sensitive to touch). The pain and tenderness tend to come and go, and move about the body. Most often, people with this chronic (long-term) illness are fatigued (very tired) and have sleep problems.” My husband’s final diagnosis came a few years later. His was rather non-specific, as he was diagnosed with chronic pain. Most of his pain is in the back and neck. His pain causes him to become fatigued as well.
I do not mean to paint a dismal domestic picture at all. Yes, it can sometimes be frustrating and discouraging. However, as my husband said, “I think it helps us to understand each other, knowing that we each experience chronic pain and that we each get tired. We understand when the other one says, ‘I just can’t do this right now. Can you (do it)?’” We recognize that pain and fatigue are highly variable, unique, and personal experiences.
Our house is never clean. There, I said it. This is truth. We are forced to prioritize everything. It is a daily process. For example, last Sunday we made and consumed large quantities of cotton candy on plastic cones out on the picnic table in our backyard, despite the fact that the house was and still is a mess, and company is coming soon. It was much more important to make cotton candy with our 10-year-old daughter and her friend on that particular afternoon.
I really wanted to ask my 10-year-old daughter some questions about her experience of having two parents who have chronic pain. If you want an honest answer, ask a kid. “Well, sometimes it gets a little annoying because my mom always has to rest,” she said. “And when I want to play a game, my mom or dad’s backs might be hurting; and when their backs hurt, they can’t do anything. But sometimes they do compromise for me. For instance, my mom can play chess with me on the computer when she is resting on the couch.” Here is a little bit more from my kiddo: “We have shorter day trips because my mom sometimes has to take a bath in the morning because of back pain… Sometimes she uses a wheelchair (at theme parks, etc.) so that she doesn’t have to stand that long. But we still have fun. I can cook with my dad, but not for a long period of time because of his back. We can’t have a cooking marathon.”
I must admit that her comments were a bit painful to hear. I think that we do much more with her than what she was perceiving at that given moment. She does not realize how much we do while experiencing pain, because we do not mention our pain unless it is necessary to explain why we cannot do something or why we need to do it differently. I have to smile because she said that we still have fun. Honestly, it makes me feel a bit triumphant.
Just like everyone else, we cannot do life alone. People with chronic pain can tend to become isolated. I completely understand how that can happen. So, one priority is that we find ways to interact with other people. Yet again, housework be damned. We are blessed with supportive and understanding friends. I do not have time to fret about the people who do not understand. I also feel that it is important for my daughter to go to friends’ houses, and for her friends to come to our house. For her own health and development, I think that she needs to experience families where pain and fatigue are not an everyday thing.
Yet, there might just be a gift in our unique situation. I can see it when my daughter extends authentic compassion and understanding to others. As she grows, I hope to see this part of her mature. That gift would seal a little bit of triumph in my heart forever.
About the Author:
Kristen Counts is an occupational therapist and a freelance writer. She has fibromyalgia, and lives in rural Indiana with her family.