Loved ones who don’t understand

As physically painful as fibromyalgia is, there is also great emotional pain that comes to those with the diagnosis.

I heard a moving story told by a young woman who spoke of her family. After she was diagnosed with fibromyalgia, many of her family members started to compare her to her aunt, who was considered a relentless hypochondriac. They would say things like, “You are starting to sound just like Aunt Hazel, always complaining about pains that we all know are just imaginary.” As I heard the story, I remember thinking, “How unfair of them to compare the young woman to her aunt. Fibromyalgia is a real condition; it isn’t imagined like her aunt’s pain was.” But the young woman had both heart and understanding that exceeded my own. She went on to say that the words of her relatives led her to suspect that her aunt probably had fibromyalgia, but that she was just never diagnosed. “Poor Aunt Hazel” she said. “She hurt so much and nobody believed her.”

I’ve also experienced the disbelief from others about my pain, and I’m sure that you have too. It is easier to take when it comes from strangers or casual acquaintances. It is more challenging when it comes from those closest to you. After all, you expect the people closest to you to know you. They should know you are honest, and they should know you are not crazy.

I have a very good friend whom I’ve known since childhood. She knows more about me than almost anyone alive. Through the years I’ve shared all the elation and heartaches of life’s ever-changing kaleidoscope with her. And for the past 15 years, I’ve talked with her about the difficulty and pain of having fibromyalgia. Still, she sometimes says things that cause me to realize that she doesn’t get it. We’ll be talking about someone we know who is experiencing migraine headaches and she will say, “I feel so bad for Mary. You and I just can’t imagine what it is like for her, being in pain all the time.” I feel bad for Mary too. Migraine headaches certainly can’t be any picnic in the park. But this is one of my very best friends, telling me that I can’t image being in pain all the time. Her words bring me emotional pain. I don’t correct her, but it brings the knowledge that in some ways I share more understanding with strangers who have fibromyalgia than I do with this very good friend.

If relatives and friends can be hurtful, spouses can be the most precarious relationship of all. Unfortunately, how you feel affects how you behave and what you are able to accomplish. Having fibromyalgia literally and directly affects your spouse. If that person doubts your pain, it is difficult to cope. My own spouse reacted to my initial symptoms and diagnosis by feeling “cheated” that the woman he married had become someone who could no longer enjoy the previous active lifestyle we had shared. Through the years he has come to accept my pain and limitations, but if I ever bring up the word, “fibromyalgia” in conversation, his response is, “You don’t have fibromyalgia.” I’ve had to accept his denial because he refuses to accept my diagnosis. The years have passed, and I feel much better these days. His reaction is better too. He watches to make sure that I take my guaifenesin. When he sees that I hurt, he suggests constructive things like; “take a hot shower, stretch, or take a “fix-er-pill” before bed” (He is referring to Flexeril).

Recently, my elderly mother has been ill. The road to a diagnosis has been filled with frustration. She experienced pain that moved around from jaw to elbow to knee to hip within days or weeks, along with being extremely fatigued, losing her appetite, and losing an alarming amount of weight. For awhile, I wondered if she had fibromyalgia. It now appears that she does not. I think we have her correct diagnosis, and she is on her way to feeling much better. However, after several weeks of hearing about a pain in her jaw today that disappeared and was replaced by a pain in her elbow, knee or hip, I started to doubt her. My own mother, whom I have known forever, I doubted. She has always been honest & never been prone to imagining pains. But my mind kept saying things to me like, “people change and the elderly do get dementia.” Thank goodness I stayed by her side on the difficult journey to her diagnosis in spite of having some doubts. The experience did teach me how truly challenging it is to believe those of us with fibromyalgia. We look well. As much as they want to, others just can’t see or feel our pain.

When I was in my early 20’s I rented from a woman whose history I hear about through a coworker who had dated her son. I learned that her wonderful husband had been the innocent victim of a car accident and died at a young age. While I rented from her she was living with an abusive alcoholic and seemed very unhappy. One day as I came through the common entry that served as an exit for both my apartment and her main living quarters, she was scrubbing the floor. I made a comment about it being a nice day, and she said she didn’t see anything nice about it. I tried to make cheery conversation, and I will forever remember what she finally said to me, “I’ll never forgive my husband for leaving me.” I was shocked. I said, “But someone told me that he died in a car accident.” She answered, “It doesn’t matter.” That day I learned that sometimes people hold grudges against others for things that are truly not their fault, and I realized how poisoned a person makes their own life through their lack of forgiveness.

I wish I could give you some magic that would allow others to “know” how your body feels. That magic doesn’t exist. What does exist is forgiveness. Your first priority is to take care of yourself, and that includes keeping your stress level as low as possible. Anger, hatred, and frustration can translate from your emotions to become pain in your body. Forgiving my best friend for not remembering my pain is healing to me. Forgiving my spouse for feeling cheated and for his denial of my diagnosis is healing to me. I gain nothing in my relationships or in my wellbeing by holding negative feelings. Also, forgiveness begets forgiveness. It might start up the forces that will allow others to forgive you for being sick. No, it isn’t your fault, but like the lady who couldn’t forgive her husband for his accidental death, others might harbor some resentment about your fibromyalgia. You might even need to forgive yourself. Again, it isn’t your fault, but that “doesn’t matter.” Forgiveness isn’t a magic cure, but it is very constructive action.