The Everyday Challenges of Fibromyalgia
Facing the pain of fibromyalgia
Andrea Cooper, 54, of Phoenix, Md., has had fibromyalgia for more than 30 years. When her pain forced her to retire from her job as a graphic designer, she began volunteering for the American Pain Foundation.
She now shares her own pain struggles with others so they know they are not alone. Here, in her own words, Cooper describes the daily challenges of fibromyalgia—and how to cope with them.
Being afraid to talk to people (even some health-care providers) about your pain and other fibromyalgia symptoms because they will brand you a "difficult" patient, a complainer, or a hypochondriac.
How I cope: I realized that there were a lot of other people out there who were just like me. I realized that I could share with other people my assertiveness, and my unique talent of being able to be honest with people and to talk to my doctors honestly, as equals. And that's when I decided to seek out opportunities to become a health advocate.
Worrying that your husband considers you a burden, or that your kids question why you aren't like other moms.
How I cope: I became more aware of the fact that complaining about my fibromyalgia all the time wouldn't be a good idea. It's not something I want to model for my kids. It's not something I want to come between my husband and myself. I started talking about my personal pain less, and talking about my advocacy efforts more. I began showing how a can-do attitude is more helpful than not.
Staying on schedule
Feeling that people will perceive you as unreliable because you forget or cancel appointments or engagements at the last minute.
How I cope: People with fibromyalgia who are in pain all the time need to know what to do with their thoughts, how to deal with all of the little disappointments and the everyday problems that we run across. We're not born knowing what to do. Counseling, in my mind, is extremely valuable, as is writing notes to myself either on the fridge or on my computer.
Dealing with pain in public
Being so uncomfortable at work, in a theater, or in public that you feel like you could explode. Not having the right medications to help you get through the day or night.
How I cope: You have to take action and find the right combination of medications for fibromyalgia. Some pain drugs act faster than others; if you have a fast-acting medication, you can use that like an asthmatic would an inhaler. In these situations, if I can lie down, do some deep breathing, and just get myself through that crisis time, then that's what I need to do. And my kids know that. My husband knows that.
Keeping it together
The challenge: Never knowing when your fibromyalgia will cause you to fall apart, or for how long.
How I cope: I do deep breathing. I do positive thinking. I work on my posture. I exercise very carefully. I research what I should do, and what I shouldn't do. And from my own experience, I set limits for myself. I try to leave room in my life for happiness.
Finding activities that bring you joy
Having to give up so many things due to fibromyalgia: planting flowers, playing the guitar, watching a movie comfortably, driving a car longer than a few minutes, working a full day.
How I cope: For me, it's music. Every year I go to a folklore center in West Virginia and sing for the entire week. While I'm singing and laughing, the pain goes into the background. I also volunteer at cancer centers doing artwork with patients while they receive chemotherapy. I love it. They are so appreciative, and I feel lucky to impact their lives.
Finding your happiness
Being excited at the prospect of going out to dinner, a concert, or other event, but by the time you get ready and get there, you are too stressed out, exhausted, or in pain to enjoy yourself.
How I cope: A key component of learning how to deal with a chronic illness like fibromyalgia is integrating it into the rest of your life without letting it take over. You need to leave room for joy and happiness and contentment; for exploration and knowledge; and for things that make you like yourself and like the world. Sometimes going beyond your regular limits is worth it if in the end it brings you great joy.
Feeling as if I never finish anything: dinner half made, endless to-do lists, songs never finished, piles of art projects barely started. Also, always running late for appointments and losing track of things, lost in fibro fog.
How I cope: When I started speaking up for other people, I did start to feel better about myself. It didn't diminish the pain. I still have as much pain as I had before, although I handle it differently, because I have educated myself.