Q&A with Maggie Buckley, Co-Founder of The Women With Pain Coalition
Maggie Buckley is a past president of the Ehlers Danlos National Foundation, an organization that supports and informs people who have Ehlers Danlos Syndrome. EDS is a group of connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. This invisible illness has much in common with FM, from difficulty in getting a diagnosis to the "But you look so good!" reaction so familiar to FM patients. Buckley is also a co-founder of The Women With Pain Coalition, an organization dedicated to improving pain care for women. Fellow co-founders include Lynne Matallana, executive director of the National Fibromyalgia Association; Meg Harmon of the EDNF; Micke Brown of the American Pain Foundation; Lennie Duensing and Kathryn Padgett of the American Academy of Pain Management; and Sharon Latson of the Sankofa Group in Chicago. Recently Buckley took some time to talk about EDS and The Women With Pain Coalition.
NFA: When did you first become involved with the EDNF?
MB: I got involved in 1990. A friend of mine found the organization [for me]. I had been diagnosed as a teenager. I’d been living with it and coping with it all along—then I found this group of people. Most of them had been diagnosed as adults. I had worked through some of the stuff they were faced with at that point. It just naturally evolved that people would see me and say, ‘You’re coping really well with that.’ I became somebody that people would come to and seek out. The natural progression was to get involved, join the board of directors, and eventually become the president of the board of directors and a branch organizer.
NFA: What was your path to diagnosis like?
MB: I went into the emergency room with a dislocated knee and shoulder. The doctor on duty actually had EDS. He said, "Let’s run some tests." He did all kinds of evaluations. Then he told me, "Only you can set your own limits. You need to know what feels good, what feels right, and figure out what you can do," which is great advice to give somebody. I’m thankful for that experience. Then, in my 20s, I had a series of problems from doing things on the list of "do not do," including windsurfing and running. I had several injuries, and the diagnosis was confirmed. At that point I learned the name. Diagnosis is typically very difficult, but it is definitely easier [now]. The new nosology from 1994 spelled it out. (Editor’s note: For details on this nosology, which categorizes Ehlers Danlos Syndrome and differentiates between its different types, go to http://www.ednf.org/nosology.html.)
NFA: How many people have EDS?
MB: When I was first diagnosed at the age of 13, thirty years ago, the doctor told me, "It affects one in 750,000 to one in 100,000 people, so the fact that you and I are meeting is pure chance." Now we know EDS affects one in 5000 people; however, only 5-10% of the people that have it have been diagnosed. Many also have fibromyalgia. [People with EDS experience] a lot of microtraumas—small injuries—repeatedly. The neural pathways don’t really have a chance to repair, don’t have a chance to adjust to these varying levels of chronic pain. The tender points become very much exacerbated because they’re so close to the joints. I can’t offer statistics, but anecdotally, on the online discussion boards, easily three-quarters of the people who have hypermobility type of EDS talk about the symptoms of FM.
NFA: How do people react to your EDS?
MB: I get a lot of pity responses—"Oh, but you’re so young." I say, "Well, thank you very much for the compliment. I am thankful that I can be out here with you today, because without the wheelchair I wouldn’t be able to do it." Life before the wheelchair was a series of naps throughout the day, to store up enough energy to go out and do stuff. The very first time I used my wheelchair, this little boy in the grocery store said, "Mommy, that lady’s in a stroller, but nobody’s pushing her. If I had batteries in my stroller, you wouldn’t have to push me." He just thought it was the greatest thing. From that day on, I knew there was going to be a variety of responses; some of them were going to be memorable in a positive way, and some of them were going to be memorable in a negative way. It’s just life.
NFA: What is the goal of The Women With Pain Coalition?
MB: We want to improve pain care for women, promote awareness, and let people know there is a gender bias out there. We also want to encourage people to get involved on the legislative level, not only on the same issues of pain, pain awareness, drug enforcement, and the problem of getting appropriate pain care, but also in terms of influencing research and access. It’s generally assumed if [researchers are] looking at pain, they’re looking at pain for everybody; however, historically we know that men have participated in more medical tests. Women are definitely underrepresented.
NFA: Can you speak a bit more about that gender disparity?
MB: It continues to be the case that if a man and a woman go to the doctor with the same set of complaints, you’d assume that the doctor would give them the same type of treatment; however, if pain is one of the issues that brought the patient in, it’s more likely the man would get painkillers and referrals, and that the woman is going to be given maybe an antidepressant, and be referred for counseling or psychotherapy.
NFA: Why is that?
MB: The first big difference is that men go in and describe their pain in terms of, "I’m in so much pain, I’ve missed so much work, I’m going to lose my job." A woman says, "I’m in so much pain, when I come home from work, I can’t take care of my family." Don’t talk about how much work you’ve missed or what you can’t do. Talk about your body. Talk about, "It hurts me at this point when I do this, or when I try and do that. On a scale of 1 to 10, it hurts this much." Our advice is, don’t try and go for a big number for dramatic effect; communicate as precisely and clearly and exactly as you can. If it’s your knee that hurts, use your hands to show, "When I bend it this direction, it feels like it slips this way." If they have an anatomical model or chart in the room, use it. Does it feel hot? Does it feel cold? Does it feel sharp? Does it pulse? Does it feel tight? Does it feel like it’s liquid and can’t support you? It’s very important for women to learn to talk about their pain in specific terms.
You can learn more about Ehlers Danlos Syndrome from the Ehlers Danlos National Foundation: http://www.ednf.org/.
