FOR IMMEDIATE RELEASE

LADY GAGA FIBROMYALGIA ANNOUNCEMENT GIVES VOICE TO MILLIONS OF PATIENTS

Superstar seeks rejuvenation and reprieve from symptoms of disease

Logan, Utah. Sept. 19, 2017 - Statement from Sharon Waldrop, Vice President of the National Fibromyalgia & Chronic Pain Association on Lady Gaga’s recent announcement that she suffers from the illness:

lady gaga sm"We commend Lady Gaga for the incredibly brave act of revealing her fibromyalgia diagnosis. By sharing her story with the world, she is giving voice to the estimated five million Americans like me--overwhelmingly women--who suffer with the illness.

Fibromyalgia is characterized by a long list of symptoms, including chronic pain and debilitating fatigue. The cause is still unknown, there is no cure and it lacks effective treatments and understanding. Better treatments and a cure can be found, if we raise awareness of the disease and the devastating challenges it presents daily to millions of American families.
Fibromyalgia’s invisibility and the public’s misunderstanding of its effects often leaves people afraid to reveal their diagnosis. When I was diagnosed with the disease I thought my life was over. My once-healthy body suddenly felt badly bruised and broken even though on the outside I looked completely fine. I was even yelled at for using my disability parking pass, because people didn’t believe it was mine. Those who suffer from fibromyalgia could be your friends, coworkers, neighbors and family members, who have been suffering in silence with this disease for years. It is our hope that Lady Gaga's courageous act to step forward into the light will inspire others to do the same.

More answers are out there, but we need everyone's help to advocate for increased resources toward finding them. We urge the public to contact their legislators and ask them to implement and fund the National Pain Strategy developed by the Department of Health & Human Services to address the burden of Chronic Pain in America. We look forward to continuing our work on finding a cure for fibromyalgia. With the support and participation of leaders like Lady Gaga, the government, advocates and patients, no goal is unachievable."

The National Fibromyalgia & Chronic Pain Association is your partner in tackling fibromyalgia and chronic pain. Our goal is to end chronic pain conditions from derailing lives by promoting early diagnosis, driving scientific research for a cure, and advocating for appropriate, accessible, and affordable treatments. Join our online community at fmcpaware.org.

MEDIA CONTACT: Sharon Waldrop
248-885-4673; waldrops@famichigan.org

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"Look, we don’t have to take the trip. The kids will get over not going and be fine."

 

Listening to her husband, the woman—experiencing a fibro flare—started to cry. "I don’t know. I am in so much pain. I’m afraid that I will be an awful drag."

 

Her husband got up and turned off the TV. "We can bag this trip and have an at-home vacation. There will be other times to visit the Grand Canyon. Don’t cry."

 

She looked sadly at him and responded, "We can still go. I know you are trying to help, but I wish you would just listen." The husband probably thought that he was listening to her. After all, he had heard that she was in pain and afraid of what she would be like on the trip. And he was trying sincerely to help by suggesting that the trip which was causing her fear be canceled. But he wasn’t listening. Not really.

 

To fulfill his wife’s need to "just listen," this husband would have to become more aware of what he was doing other than listening. Like all of us, he has developed non-listening behaviors that are so automatic that he is not even aware when he is doing them. In this case the husband is problem-solving rather than listening. So, the first step in really listening to someone you love or to a coworker, boss, friend, or doctor is to recognize your habits of non-listening. Here are four of the most common forms of non-listening.

  1. Giving Advice
    Suppose someone says to you, "I’m so confused. I have to get a new doctor and I don’t know how to start."  Typical reactions might be, "You should try the guy I go to. He’s really nice."  "Maybe you should see which doctors are on your list of providers with your insurance company."  "You have to get someone who really knows about fibromyalgia."  These may be well intentioned bits of advice, but they are just that: advice. They are not listening. If you respond with advice before listening, then you may be giving advice or solving a problem that doesn’t exist. As clear as a person’s message may sound to you, as with this person who seems to be saying that she needs help getting a new doctor, don’t jump in too quickly. If you are to listen, you would first check out with her to see what the confusion is about. Maybe she is unsure as to whether she has to call the insurance company first; maybe she needs a referral and doesn’t know how to get one; maybe she’s not sure if she wants to go to a male or a female physician. 

    Clarify with her what other feelings she is having—fear of making phone calls, dread at going to another doctor, worry that she won’t be understood, confusion about how insurance works. Only after you have really heard the person will your response to her be helpful. In fact, your very act of listening may help her to clarify her feelings, needs, and course of action. Maybe what she needed was just that, your listening, not your advice.
  2. Defending
    Probably the most egregious and most common non-listening behavior is defensiveness. Imagine someone saying to you, "I’m so mad at you for telling my mother that I was sick. Now she’s calling me every day." Without skipping a beat most of us would respond with, "I didn’t mean to."  "It wasn’t my fault. She asked and I couldn’t lie to her."  "Anyway, I think she should know." We are so busy defending ourselves that we neglect completely to listen to the person who is speaking. And in defending, we don’t learn much at all about the person who is speaking. Could it be that she is reluctant to worry her mother? Was she wanting to tell her mother herself at the "right moment" and now resents being deprived of the choice? Is she wrestling with how much she wants to tell anyone about having an illness? When we defend instead of listen, we try to take care of ourselves. We fail to understand the speaker and also fail to make contact. Defensiveness often produces an angry exchange and lingering bitterness.
  3. Identifying
    Identifying with the speaker, saying "Me too," is a tricky form of non-listening. It actually seems like listening but it’s not, not really. Consider this example. Two women with fibromyalgia are talking about trying to exercise. One woman says, "I really need to run every day. It keeps me sane. But now I don’t think I can run." The other woman responds, "I’m the same way.  I was forever running or playing tennis. Now I just read or do needle point. But it’s not that bad. I have learned to do some beautiful, complicated needle point." 

    Has the second woman actually listened? Not really. Instead she has presumed that her friend has the same problem that she has in not being able to exercise. She has gone on to relate a solution that she has discovered for herself. But suppose that the first woman has depression and has learned that running, for her, is the best antidepressant. Suppose she is now terribly anxious that without being able to run, the depression will overwhelm her. Her friend’s story of alternate activities, books and needlepoint, are irrelevant to her. Her friend hasn’t heard her terror of depression and hasn’t heard the therapeutic role that running has meant to her. Her friend has presumed and launched forth into her own story. When we identify with someone by using a "me too" story, we presume that we have heard exactly what the other means. Such presumptions often disregard the speaker’s unique message as we focus on our own story.
  4. Judging 
    On some level we all tend to judge the person who is speaking. We may not mean to judge, but it is part of human nature to do so. We may be thinking, "She’s so cute." or "He’s a thoughtful person." or conversely, "He’s a pain in the neck." or "She’s so boring." It is this knee-jerk reaction we need to curb when we really want to hear someone. If a friend with a wheat intolerance says to you, "I’m going to experiment with my diet and see if I can handle eating wheat once a day," and you are thinking, "You’re nuts," your judgment bars you from understanding. You won’t be able to understand why the speaker is wanting to conduct such an "experiment." Instead of trying to get inside the speaker and to understand, you stand outside the speaker and brand her or him with your opinion or judgment.  If you regard someone as a complainer or whiner, you cannot hear his or her suffering with empathy or compassion. If you label someone as selfish, you cannot respect his or her effort to be self-respecting. Judgments are barriers to understanding. They keep us from appreciating the speaker’s feelings, intentions, thoughts, needs, and perspectives. We have to remove consciously that barrier to achieve real understanding.

Now You Are Ready to Listen

 

In order to listen, to pay close attention to what someone is saying, let alone to understand what they mean, you have to know the specific ways that you tend not to listen (advise, defend, identify, judge). Learn to restrain these non-listening reactions. Then, be quiet and focus on the speaker’s words, tone of voice, and body language. Commit yourself fully to giving complete attention to the person who is talking to you. You have to abandon the notion that you can really listen to someone while you are watching TV or working at the computer or reading a paper or not looking at them. If you really want to listen you cannot multi-task. You need to put aside what you were doing and focus on the speaker.

 

Then, after giving this kind of attention and really listening, you have to let the speaker know what you are hearing. For example, if you were the husband hearing his wife talk about the planned trip, you could say (in a questioning tone), "You sound worried that you will be a wet blanket on the trip if you can’t some of the things that we have planned." Or "You sound discouraged at the pain coming back right when we are planning a trip."

 

If you were the friend of the person not able to run any longer, you might respond, "It sounds like running has been very necessary for you," or "You sound worried that not being able to run will have awful effects on you." When you offer back to the speaker what you think you have heard, you do so with a tone that indicates that you are receptive. By doing so, you allow the speaker the space to clarify further or to confirm that you have indeed heard him or her. If you have heard accurately, the speaker often will start to nod his head, or smile or say something like "Exactly!"

 

Listening to someone is giving that person the gift of our attention, our interest, our time. When we listen we offer what we ourselves need. We usually don’t need advice or suggestions and we certainly don’t need to be judged. We need to be heard. We need to have the space provided by another’s caring attention to express our feelings and to clarify our thoughts. We all need to learn to give what we so very much desire to receive. We need to learn to listen.

 

Paul J. Donoghue, Ph.D. and Mary E. Siegel, Ph.D. are the authors of the book, Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness and Are you Really Listening? Keys to Successful Communication.

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