Living With, and Managing, Chronic Pain: A Patient’s Story
As a psychiatrist, I (SW) work with patients who have chronic pain to help them understand it, to reduce their pain levels as much as possible, and to live a full life, despite pain. It is a complex undertaking for patients, and one that takes a good deal of time to figure out.
I recently gave a presentation to a religious group that was interested in learning how to help their members who had chronic pain. In addition to my talk, I thought it would be helpful for them to hear directly from someone who has worked extremely hard to manage chronic pain and live well despite it. Her part of the talk went so well that I asked if she could write up her remarks to share with the pain community. They are presented here.
My hope is that this article can be used to help other patients who live with chronic pain learn to manage their symptoms and enjoy life despite pain. Having models can help other patients not have to “reinvent the wheel.” I would invite all healthcare providers who work with patients with chronic pain to reprint this article to be able to hand it out to your patients.
I hope that my sharing this information, will make it easier for others to cope with this disease.
Meet Beth Thorp
I am a 59 year-old woman who has had chronic pain for about 18 years. In the beginning I had left-sided sciatica, and now my pain has expanded to my low back, neck, arms, and various other parts of my body. In this article, I will be covering 3 topics:
- My “Coping Plan”—or how I manage my pain beyond the use of medication
- Some of the challenges I’ve faced in managing my pain and how I address those challenges
- How family and friends can help those with chronic pain
My Coping Plan
While medication is a necessary and core tool for me in the management of chronic pain, I believe that it’s really important to have a variety of other tools to use. Many people use complementary medicine such as acupuncture, therapeutic massage, Reiki (or a practice of hands-on therapy), and other such approaches. But I’d like to focus on
5 main lifestyle forms of pain management that work well for me.
1. Movement and Exercise
This is probably my most important coping tool for a variety of reasons. Exercise helps in several ways, both physically and mentally. In my early adult years, I was very active, participating in ice dancing, skiing, and roller blading. Because of the pain, my exercise now involves mostly just walking and low-impact aerobics.
Even if I’m in pain, movement can help me to feel better. Physically, it loosens my joints, keeps me limber, and helps me to stay in shape. Mentally, it takes my mind off the pain, and it provides me with social interaction if I exercise with friends or in a class. If I’m in too much pain to really exercise, just changing positions—from sitting to standing, or standing to lying down—can help reduce my pain.
2. Change of Scenery
Even if I’m not really feeling up to it, getting out of the house, getting fresh air, walking around the block, doing an errand—anything that takes me into a different environment can help reduce my pain.
This is a tool I adopted almost by mistake—or trial and error really. It can involve any activity that keeps my mind off the pain, such as reading, watching TV, knitting, simple tasks like coloring books, etc. I used to feel guilty about how much TV I watched until I realized how effectively it reduces my focus on pain. Distraction may not actually reduce my pain; it just takes me into a different world, thus away from my pain. This may, in fact, be one of the best tools I have.
4. Support Groups
About 2 years ago, I joined a support group for patients with chronic pain. The group is run by a psychiatrist who specializes in treating patients with chronic pain. Until I joined this group, I didn’t realize how helpful it would be to spend time with others like me. It’s extremely helpful to know that I’m not the only one with chronic pain. It’s a relief to be able to talk with others who “get it”—who know what I’m going through. Sharing stories, ideas, concerns, frustrations, and hearing the same from others is wonderful!
5. Don’t Over-Do
I have learned that I need to be realistic about my capabilities. It’s critical that I don’t over-do. It’s important for me to limit my activity every day, even on “good” days, or I’ll pay for it later with higher pain levels. I usually try to schedule no more than 1 or 2 activities per day.
For example, I might attend an exercise class in the morning, and then have lunch with a friend. Or I might run errands in the morning, and go out to dinner with my husband in the evening. Even if I’m not having a “bad” day, I must rest in the afternoon—read in bed, meditate, or take a nap. If I don’t take the time to rest my body and my mind every day, my pain will flare up.
Chronic pain is variable, so having a range of tools to use in managing it is critical in successfully living with chronic pain. While I’m in pain every day, it’s not every minute or even every hour. So I need to use the tools in my tool box that will be most appropriate to the day, the hour or the minute to make myself as comfortable as possible.
The Challenges of Living With Chronic Pain
As with any chronic illness, chronic pain brings a set of challenges. In this section, I’ll review the biggest challenges I’ve encountered with this condition, and then describe some suggestions I’ve uncovered to address them.
People Don’t Understand
I think the most difficult part of having chronic pain is that most people don’t understand it. There’s a large difference between acute pain, which everyone has experienced, and chronic pain. Chronic pain is not just acute pain that lasts a long time. And because I look well much of the time, people don’t understand that I’m in pain. And if I’m not in pain at the moment, I could be any second. It can come on very suddenly.
Although I don’t want to talk about pain all the time, I do think it’s helpful for the people with whom I spend a lot of time to understand chronic pain and some of its complexity. To understand that I’m not just a ‘baby’ with a low tolerance for pain or that I’m just not coping well. To understand that just because someone else had back surgery, for example, and is now fine, doesn’t mean that I should also be fine.
The Desire to be Normal
Something that I think anybody with a chronic illness struggles with is the desire to be normal. I want to keep up with everybody else, especially if I’m not in pain at the moment. However, if I take on too much, or over-do activities, I’ll pay for it later.