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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Having an invisible syndrome like fibromyalgia can stress relationships because it shifts you into a new reality that isn’t seen or understood by friends. Let’s face it: having a confounding syndrome like fibromyalgia is baffling to all concerned. You, your family, doctors and other health care providers can’t explain exactly what fibromyalgia is, why you got this syndrome, or how to treat it. It is no surprise that explaining it to friends can be down right impossible. How many times have you tried to explain to friends what fibromyalgia is and saw in their faces an expression of complete confusion? A friend’s lack of understanding can be upsetting, but it doesn’t have to cause the end of the relationship.

 

Not understanding what you are going through is by far the most common reaction of friends, and that stresses the relationship. Other reactions from friends can also be hard to experience. Most will express some kind of sympathy for your ailment, but don’t really know how they could be of help. Others might be confused or even skeptical, and come up with their own diagnosis—the worst of which is that it is all in your head. It isn’t surprising that some friends judge you to be exaggerating, making excuses or possibly turning into a hypochondriac.

 

Most friends are caring and remember to ask: "How are you doing?" This is usually appreciated but also can present some dilemma for the fibromyalgia sufferer in how best to answer. When managing well with low pain it is easy to reply, "I’m fine." But when in flare, do you dare tell the truth and list off the troubling symptoms of widespread body pain, poor sleep, low energy, difficulty concentrating and functioning fully, and feeling low? No, I don’t think many of us will tell the blunt truth of our experiences with fibromyalgia to friends. It is important though to find ways to share with friends some of what you are experiencing. Educate them gradually about how chronic pain robs one of a sense of well-being, and limits functioning and ability to participate with family and friends in usual activities. Friends can’t take the pain away but they can hear you out and respond with validation and comfort for the losses you are experiencing. This can go a long way in easing the pain.

 

It isn’t easy to do this kind of sharing when we are in the midst of a flare and at our worst. The irony is that when we need our friends the most, we tend to withdraw inward, isolate ourselves, and not reach out for support. Flare is always upsetting. We know we aren’t good company when fibromyalgia wears us down, as it does from time to time, and so we isolate or just stay quiet. Even if a friend calls we may choose to minimize or even hide how bad we feel. It is hard to resist the pull of isolation and to take advantage of comforting words from a friend.

 

There are many reasons why we might choose isolation when in pain. Female patients have, like all women, been socialized to hide bad feelings. There is also the fear that if we expose our distress we will be seen as weak or, at worst, needy. We all fear revealing our vulnerabilities and want to be seen as capable and strong. With our good friends we have developed a level of trust that enables us to be ourselves. With the challenges of chronic pain we have lost our old self and fear that by speaking of our suffering and revealing the fibro self we will burden the friendship and chance losing a good friend.

 

We have to discern which friends can deal with the realities of fibromyalgia and which can’t. We all have fair-weather friends with whom we enjoy various activities. These activity friends may take it personally when you turn down invitations. They don’t understand that if it weren’t for the limitations imposed by chronic pain, you would love to accept their invitation. There are the friends who like to give advice and take on the task of getting you well. These friends sometimes end up getting discouraged or, even worse, angry when their advice doesn’t rid you of fibromyalgia. Other friends really can’t understand why you can’t be your old care-giving self in the relationship and feel abandoned. Some friends feel helpless in the face of your suffering and cope by withdrawing.

 

You can decide how best to handle the friends who are having difficulty adjusting to your new life situation. It is just as important to consider how to keep the fair-weather friends in your life, as it is to learn how to ask for support from your steadfast friends. Friendships are a two-way street where what one does and says influences the quality of the relationship just as much as how the other behaves. We can allow chronic pain to teach us how to be a better friend or allow it to isolate and limit our friendships. The experience of chronic pain teaches us lessons of the importance of understanding, caring and compassion in relationships. It is important both to be able to give and to receive these gifts of friendship.

 

No one with fibromyalgia wants to take on the role of being "the sick one," or to be seen as a patient who is pitied in a relationship. We want understanding, support and recognition from our friends for the way we are meeting the challenges of fibromyalgia—not pity. We do best when we don’t allow our aches and pains to take the foreground in our lives and relationships. This means that in our interactions with friends we are always negotiating between how much to share about our troubling symptoms, and wanting to be our old selves in the relationship. Most of the time we need the distraction of not thinking or talking about symptoms and the enjoyment of talking about all the usual things we share with friends. In all good friendships we share a mix of the good, joyful, funny, and bad that life offers. Most of all, we need and want to laugh with our friends. Friendship is healing and is the best medicine for the body, mind, and heart.

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