One of the biggest challenges for women with fibromyalgia is feeling heard.
We go to medical doctors and they might say, “there is nothing physically wrong with you”, “it is all in your head”, “you are just a hypochondriac”.
If you have danced with the new age or positive thinking movement, you may have heard, “take responsibility for your health”, or “you created it”, or “just get over it”.
Family and friends might say, “you’re just lazy”, “your being selfish”, “everyone has pain”, “your overly sensitive”, and on and on.
It just hurts. What they say hurts.
Because there are some days that you barely have the energy to get out of bed. Or perhaps your pain is so bad that it is impossible to function. Or the brain fog is so bad that clear thinking is impossible. Or you skin itches so bad that it hurts to wear clothes.
You can’t do the things they think you can do. You feel their judgement and condemnation. Perhaps you silently feel the same way, you don’t understand why you feel the way you feel either and you just want to feel better, but you feel helpless to do anything about it and nobody else seems to understand either.
Truth is, they do not understand.
It took me years until I realized that they truly could not understand. As I lay in bed one day wishing I could die, I realized that if I wasn’t having this experience, I wouldn’t be able to understand either. The pain and fatigue I experienced and the disabling effect it had on me was beyond understanding.
One day a friend of mine had just come home from the hospital, where he had been for several day with meningitis. The only treatment they could give him was to keep him hydrated. The illness had to run its course. He said to me, “I think I can understand how you must feel. I was in complete misery for a week and couldn’t do anything about it.” I said to him, “Imaging feeling like that every day for 30 years and you might be able to fully understand how I feel.” I did appreciate his comment and understanding. It helped.
Adopting a healthy attitude.
Once I got how impossible it is for someone not having fibromyalgia to understand the experience I was having, I could deal better with the people who said such things. I didn’t need to change them. I just understood that they had no idea what they were talking about.
I adopted these three attitudes which helped me immensely.
- I didn’t take it personally. What they were saying had nothing to do with me. They were talking from a place of unknowing. I knew what I was experiencing and what I could and couldn’t do.
- I could forgive them for their ‘cruelty’ because I knew that they didn’t know what they were talking about. They were acting and speaking on misinformation.
- I realized that I had to trust and rely on my own knowing and inner council.
- I let go of the need for anyone else to understand what I was going through.
This brought me an increase sense of inner peace.
It was still frustrating at times and very lonely. But letting go of the guilt and blame released a great deal of inner struggle and torment. I was no longer holding myself up to a standard that others held me up to. I stopped criticizing myself for being sick. I was able to hear myself and my own pain.
I could share my experience with others, who were interested, but even as I was sharing, I got that they couldn’t really understand without the experience of it. Just imaging trying to explain to someone what an apple tastes like if they had never tasted an apple. Do words ever fully describe an experience?
Is this still a struggle for you?
Is there a step you can take to be understanding and forgiving toward the people who say unthoughtful things? Can you be more understanding and forgiving towards yourself? What would that look like for you?
I hear your pain.
When I hear you, I hear your pain. I have been there. I am not any more, but I know the experience. I still have my issues. I am still healing, but I am so much better than I was. I truly want that for you too.
Until we meet again.
With love, understanding and compassion,