“Empowering the Patient”
The following remarks were given on May 15, 2011, by Dr. Sue Shipe at an Institute-sponsored Fibromyalgia Conference entitled, “Empowering the Patient.” We hope that you will find it relevant for dealing with many kinds of chronic illness and pain.
June 5, 2011–The purpose of our coming together today is to give one another support, find hope, learn coping strategies, empower ourselves with new information, and learn to live well with Fibromyalgia.
We have pain. Physical pain can be horrible. However, I don’t think I’ve experienced any physical pain worse than some of the emotional pain I’ve known. Emotional pain comes from feeling separated. Feeling alone and isolated. Feeling that nobody cares. Feeling like there are no options. Feeling that one can’t face the problem. Feeling like giving up, but knowing that it won’t go away even if we do.
So, while our medical experts address primarily our physical experience of Fibromyalgia, I want to focus on the emotional part of Fibromyalgia. I’m not talking about clinical depression and anxiety that may be rooted in chemical imbalances. I’m talking about our thinking, and how it affects our spirit, and how our spirit affects everything we are and everything we do.
I’m talking about using our spirit to help us overcome some of our physical challenges, and cope with the changes that life has brought. It’s not what we thought we signed up for, but it can still be a beautiful ride!
As I contemplated my 14 years of struggling with the symptoms of Fibromyalgia and some other diagnoses that I’ve acquired over the years, I reflected on what I’ve learned. I’ve tried to put this learning into life lessons in a way that we can remember and draw upon. If you follow NCIS, and I do, you know that Gibbs has his rules. When his agents get into trouble, they’re reminded of the rules meant to keep them out of trouble. These aren’t rules, but they may help to light our way through this maze or tunnel we call Fibromyalgia.
1. ‘Today is the first day of the rest of my life.’ I never understood that saying before, but I think I do now. It means that no matter what has come before, I can change my destiny right here, right now, today, by changing how I think. Once I change my thinking, I can change my actions. Once I change my actions, I can change parts of my life. Once I change parts of my life, I can change my quality of life. Once I change my quality of life, I can help others. Today IS the first day of the rest of my life.
2. What you see IS what you get–and maybe more. That means that we had better see it all! I know that one of the things that has brought me the most challenges in my life is the idea of seeing the good in everyone. That’s a great trait–if you balance it!. Even the murderer wasn’t always bad. There were good moments and maybe even good some good motives. Seeing that good must be balanced with the shortcomings as well. We need to see the whole picture. In spiritual terms, we need to see with the “eye of love” but we also need to have bifocals! We have to see the human frailties as well. Allowing ourselves to be in relationships with others whether educators, physicians, nurses, family or friends where we see only with the “eye of love” and fail to use our bifocals can cause us untold grief. We are adults now, not children, and we have to see the big picture with each relationship, personal and professional.
3. Old advocates never die; their spirits live on in others. Sometimes I look at education and healthcare and become sad. Too many people involved in them are spiritually dead. They have forgotten how to care. Find the ones who advocate for YOU. And then, find YOUR area to advocate for others.
4. Age is not a number. You can be young at 70 and old at 30. Many of my friends can’t be found on Facebook. Some don’t use computers. If you’re in the mode of giving up, hang around younger people. Nothing keeps you young like children. See the world through their eyes, and it’s we, the adults, who look pretty strange and funny!
5. Spirit drives everything. Follow your heart. Think about your dreams. Do you even remember them? Did you want to help kids? elderly? addicts? Take those dreams out and dust them off. Maybe there is still something you can do with them. Follow your dreams. They are yours alone.
6. “Yes, but….” is not in an empowered vocabulary. My greatest challenge is exercise. I’m erratic. I don’t stick to it. I keep thinking it has to be strenuous. I’ve finally decided that I’m going to stop wasting energy contemplating boot camp, and start gentle yoga. I’ll never look like Twiggy, or shape myself into a pretzel, but I’ll feel much better.
7. We can do everything we used to do; we just have to do it differently. (I learned that one from Agnes Welch, a support group leader.) My latest plan is to make our house more Sue-friendly. Our house is on 3 levels plus a basement with 6 steps between levels. I just bought two more light-weight vacuum cleaners so that I now have one on each level. I buy all kinds of house-cleaning wipes because they’re so convenient. I can still do what I did, only differently.
8. You have to kiss a lot of frogs. You may have had to kiss a lot of frogs to find your prince or princess. You may need to do a lot of sorting to find the friends and physicians who can support you. Isolation hurts. Not feeling understood hurts. Make some new friends starting right now, today. Go to, or start, a support group. Focus on strategies and relationships that support YOU.
9. Pain is not who we are. We need to be careful about allowing pain and fatigue to define us. Select activities carefully, but also don’t limit yourself. If you really want to do something, you may find that the energy will well up inside you. Spirit is stronger than pain.
10. I am not a handicapped person; I am a person with a handicapping condition. Don’t label yourself or allow others to label you. If you receive disability payments, you are not disabled. You are a spirit, a person, with a disability. Educate others. Be compassionate with yourself and others. Family members have the most difficulty recognizing our pain because they don’t want to see it. Love them, and require the same kind of response.
11. This was not part of my life plan. Of course not! Fibromyalgia or any other chronic condition requires a lot of adjustment and each of us will do it differently. But we’re smart. We can figure it out. Just give us some time, creativity, support (not help), and we can integrate it into our lives and keep on going.
12. Meditation/Prayer heals everything. Not necessarily a specific type of meditation or prayer, but whatever works for you. Meditation/prayer is spending time in the quiet with an open and receptive mind. Being near water heals my spirit as do rest, kindness, and love. We are not our bodies. We are spirits residing in bodies. This body may be only our temporary housing, so how can it hold us back?
My Mother, Madelyn Conrad Kidd, experienced challenging circumstances–18 months on a ventilator and 23 months with a feeding tube. Yet, when she died, I wrote a poem for her memorial service called, “Smile of an Angel” because everyone in that hospital who knew her was amazed by her beautiful smile. In those circumstances, surrounded by the love of amazing caregivers, her spirit suffered, but she also blossomed. Love heals. Surround yourself with love–family, friends, physicians. If they can’t or won’t love you, move on. Above all, accept abuse from no-one. Spirits need love to survive, and to grow. You are each a beautiful spirit in the garden of life. Tend YOUR spirit, surround it with love, care for it, and your body will thank you.
Sue Kidd Shipe, Ph.D.
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by Jonathan Cooper, M.D., Physiatrist
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Clinical Trials for Fibromyalgia.
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