Fibromyalgia Patient Stories
It's a disease, not a death sentence
By Kate Rope
Fibromyalgia is a disease that often causes pain, sleep disturbances, and depression in its patients. Unfortunately, little is known about the cause of the disease, and it can take three to five years to diagnose, according to the National Fibromyalgia Association. However a fibromyalgia diagnosis isn't a death sentence. Read how these six fibro patients are living—and thriving—with the disease.
Fibromyalgia changed my life completely
Fibromyalgia is a thief that can take away your career, your family, your finances. I was very involved with work and family when fibromyalgia came on suddenly in 1992. And, at first, all I could do was walk around my house crying. But finally my son told me, “Mom, I can’t come home to see you like this.” And I thought, how you deal with this is how you will end up.
So, I started a support group that began with 35 members, and now I am making a difference to more than 200 people. Physicians send their patients to me, and I truly believe that fibromyalgia was given to me for a reason. I’m still a doer. I need to feel involvedlying down was never my style anyway.
Fibro taught me to take care of myself
Fibromyalgia has taught me to take care of myself, which, for a mother of three, is a revolutionary concept. It struck me suddenly when I was in my 50s. My kids were growing up, and I finally had the time to focus on my work. Then, all of a sudden, the stress was too great, and I had to quit my job.
Now, I’ve learned to slow down. I know if I do garden work for an hour, then I need to sit down and do some other work or relax. Yes, I still have a lot of pain from time to time, but I don’t feel guilty about it anymore. I love work, but I keep it to where it’s supposed to bethree days a week. I take more time for my husband and more time for my friends, and I find time to do the things I love. It’s a much healthier way to live.
I notice things that I never did before
Fibromyalgia has changed my life for the better. I used to jog through the park, and it would send pain throughout my body. I can’t jog anymore, but I can still walk. And if I become exhausted, I can sit down on a park bench and rest. I notice things that I never in my life saw beforeI've spent 10 minutes watching a butterfly on a flower and just enjoying how beautiful it is. It’s nice to sit and feel the sun on my face and admire all the colors of the flowers in the park. I have a lot more depth, compassion, and appreciation of what life really is because of fibromyalgia.
Living with uncertainty
Living with fibromyalgia has meant living with uncertainty. I never know what kind of shape I will be in at any given time. And I also don’t know what brought on a bout of symptomsdid I over do it, eat the wrong food, exercise the wrong way? That unpredictability has led me to cancel appointments, give up a profession I loved, stop traveling, and not pursue the graduate degree I wanted.
Basically, it has meant settling for less. But good has come from it too. I enjoyed the slow times with my kids, doing art projects with them, and reading lots of bedtime stories. Today, I do advocacy work for the American Pain Foundation. I work when I can for as long as I can, and it’s very rewarding for everyone, including myself.