The Social Cost of Chronic Pain
We hear a lot of statistics about the impact of chronic pain. For example, more than 76 million people in the U.S. live with persistent pain every day. That's more than cancer, diabetes and heart disease combined. We also hear about the financial cost of chronic pain. The American Academy of Pain Medicine estimates that healthcare expenses, lost income and lost productivity from chronic pain costs the U.S. $100 billion a year.
What we don't hear a lot about is the social cost of chronic pain. That's a lot harder to measure. How do you calculate the disruption to family life, the disintigration of social relationships, or the loss of self-esteem? I don't know of a scale or yardstick that can measure those intangibles. But for the person living with chronic pain, the impact of the social cost is as great, or I daresay greater, than the financial cost.
For individuals with chronic pain, the area of family life probably takes the biggest hit. Sadly, according to the National Health Interview Survey, the divorce rate among people with a chronic illness is 75%. I can't tell you how many people I've heard from whose spouse doesn't understand what they're going through. Some spouses don't believe their mate is really in that much pain. Others believe them but just can't cope with the changes pain has brought to their lives.
It's not just the spouse who has a problem. Often those suffering with chronic pain feel guilty because they can no longer contribute as much as they once did to the marriage and family. Their income may be reduced or eliminated altogether; they may not be able to continue doing their usual household tasks; they're probably not up to going out and socializing as a couple; and their sex life may seem like a fond memory.
If there are children still at home, the guilt is multiplied. Parents want to be there for their children whenever they are needed. But many times the parent with chronic pain simply isn't able to do everything they would like for their children. For some, even lifting their child up to comfort or play with them is impossible.
When it comes to personal experiences in dealing with marriage and children when you have chronic pain, I'm afraid I don't really have firsthand experience to share. My children were already grown and I was single again by the time I developed fibromyalgia. I do hope, though, that any of you with chronic pain who are living with a spouse, significant other, and/or children will click “Comment” below and share your experiences. Also please share any tips you have found that have helped you.
I do know of an excellent book on the subject – Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife. It is written by Gregg Piburn and chronicles his journey of understanding and coping with his wife's fibromyalgia. I met the Piburns several years ago and they have an amazing and encouraging story.
Actually, I know quite a few people whose marriages have not only survived chronic pain, but they have grown closer and stronger as a result of it. So although I'm sure it's difficult, I know it is possible.
Chronic pain also exacts a toll on friendships. When people would tell me about how their friends had abandoned them after they became ill, I always thought how fortunate I was that my friends had stuck with me. But as I thought about this more, I realized that's not the whole story.
When I took a closer look at my friendships, I saw that they could be divided into four categories:
Category 1 – my three closest friends from high school. We've kept in touch, albiet somewhat sporadically, over the years. They've certainly been supportive, but the truth is my illness really hasn't come into play since we rarely see each other.
Category 2 – my longest-running adult friendships. This would be three ladies I met about 40 years ago in a women's Bible Study group in Florida. We have been through everything life has to offer – both good and bad – together. They've all been extremely supportive since my diagnosis. Two of the three still live in Florida, so the limitations my chronic pain has caused doesn't affect them directly except when we're able to get together for a visit. But since they've stood by me through many other very difficult times, I have no doubt this wouldn't make a difference. The third friend lives about 25 miles from me and also lives with chronic pain, so we're both understanding of one another's limitations.
Category 3 – my social friends. These are friends I met in social situations – through work, Little Theater activities, at a party, etc. It is these friendships that have fallen away. When I was no longer able to do the things around which our friendships were based, I no longer heard from them. To be fair, I no longer called them either. The fact is they weren't deep, personal relationships; they were friendships based on a common interest. They're not uncaring, bad people. We just no longer have the same things in common.
Category 4 – my chronic pain friends. I have made several new friends through a local fibromyalgia support group. I guess most of them could also be classified as social friends because our friendships formed around the common bond of pain, although I think one or two of them will also be life-long friends. These are good friends to have because they understand if I'm having a bad day and have to cancel plans at the last minute; and I understand when they do the same.
There's no doubt about it – losing a friend hurts, regardless which category they fall into. There is an excellent article about this experience written by Lene Andersen, an expert on our sister site MyRACentral: The Cost of Pain: Shedding Life, Shedding Love
Chronic pain can really do a number on our self-esteem. Too often, we base our sense of self-worth on what we do rather than who we are. When we can no longer do the things that make us feel good about ourselves, we begin to feel that our lives have no value. But nothing could be further from the truth.
I went through this several years ago as I began to be able to do less and less. Just getting through each day was a major struggle. I could no longer do the things that I felt set me apart and made my life worthwhile. It was then I realized that who I was hadn't changed; only my means of expressing who I was had changed. That's when I began my quest to find a new direction that would fit with my new limitations. I have to say that the result of that quest has made me feel better about myself now than I ever did before chronic pain entered my life.
If you'd like to read more about what I learned from my quest, see: You Are Not Your Illness