National Fibromyalgia Association: Patients of Color

Patients of Color
Thursday, October 11, 2007
By: Sabrina Dudley Johnson

FMOnline, vol. 7, no. 9

Once upon a time, there were three little women with fibromyalgia, all friends, who went to the same doctor. One day, their pain was so severe and debilitating, they all went to the doctor on the same day. Each woman sat in an exam room. Upon entering each room, the doctor asked: “On a scale of one to 10, 10 being the worst pain, what’s your pain level?”

Woman #1 cried, “Please acknowledge my pain and suffering! My pain is a 15. Can’t you fix me?”
Woman #2 cried, “Please acknowledge my pain and suffering! My pain is a 15. Can’t you give me something stronger?”
Woman #3 cried, “Please acknowledge my pain and suffering! My pain is a 15. Everything we’ve tried so far has not worked.”

The doctor had different reactions to each.

To woman #1 he said, “Here’s a prescription for OxyContin.”
To woman #2 he said, “Here’s a prescription for Tylenol with codeine.”
To woman #3 he said, “Here’s a prescription for our psychologist.”

What was the difference between these three women?

Woman #1 was white.
Woman #2 was Latina.
Woman #3 was African American. I was Woman #3.

Why is it important to discuss race and fibromyalgia?

Many minority fibromyalgia patients have recounted incidents with physicians who believed, “Since there are no minorities discussed in fibromyalgia research, they must not have it.”

Members of FACES (Fibromyalgia Association Created for Education and Self-help), including African American, Latina, and white people, males and females, civilians and law enforcement officers, drove three hours to a seminar. During the Q&A session, one member asked, "When are researchers going to do studies on people of color, and police officers with fibromyalgia?" The researcher replied "Never! They don't exist!"

Kathy* remembers sitting in a doctor’s office, listening to him chastise her for asking about fibromyalgia. “I’ve never seen anything about minorities and fibromyalgia,” he scolded. Kathy sighs, “Good thing I didn’t stop looking for an answer to my pain! I’m now being treated for fibromyalgia.”

Marcellus Walker, MD, and Kenneth Singleton, MD, address race and healthcare, stating: “In the current climate of ‘political correctness,’ many people consider it inappropriate to separate people on the basis of race, but, when it comes to health, race really does matter. African Americans . . . will soon experience an epidemic of cancer, fibromyalgia, chronic fatigue, and other degenerative diseases.” [1]

A University of Alabama study revealed that African Americans have a higher severity of chronic pain, an increased sensitivity to pain, and a lower pain tolerance threshold than their white counterparts. The study went on to relate that coping styles, cultural responses to stress, and biases towards/from healthcare providers may be contributing factors. [2]

Patrick*; an African American law enforcement officer with fibromyalgia, was given a referral for massage therapy. The physician called the therapist and asked if she had an opening for a male patient. She replied yes. The officer was ushered into a treatment room. The therapist entered and, upon seeing her new patient, ran from the room. "He didn't tell me you were black!" she snapped.

I remember an incident I had with a pharmacist. I was attempting to fill a prescription. The pharmacist was yelling at me, “What are you trying to pull here? Do you really think I’m going to fill this prescription without calling the doctor?”

“Call the doctor,” I responded.

“I’m calling the police” he snorted.

I pulled out my badge and ID card, slapped them on the counter and snarled back, “You do that, and call your corporate attorney also.” With that, the pharmacist gave me the prescription back.

During the 2003 meeting of the American Pain Society in Chicago, researchers from the University of Michigan related that "African Americans are less likely to receive referrals for specialized pain management than whites. [The study also reported] that African Americans with health insurance did not do any better than those without."

Brittany*, an African American, reported having difficulty with her primary care physician. “He won’t refer me to a rheumatologist. He won’t refer me for massage or physical therapy. He says that would be a waste of time.”

People of color with fibromyalgia have related cultural differences in support as well as barriers to treatment. Lonnie* told FACES that, as a Latina, she was expected to do everything without any assistance from her husband, whether she was sick or not.

Sharlene*, an African American, remembers telling religious family members that she had been diagnosed with fibromyalgia. “Don’t claim it! Just give it over to God,” they instructed.

FACES was founded by people of color and public safety workers with fibromyalgia. We wanted to ensure that the diversity of people affected by this condition receive equal recognition in research and awareness projects. We also realize that the special issues of pain management disparities and cultural competency must be addressed on multiple fronts. Therefore, FACES concentrates on partnerships with other fibromyalgia organizations, government agencies, members of academia, disability organizations, members of law enforcement, and various community-based organizations.

Through our partnerships we’ve learned there is no “one size fits all” approach to cultural sensitivity and pain management. If a fibromyalgia organization wants to reach out to segments of the minority population, they must do their research. Don’t think putting together a brochure with a couple of symbols will be appropriate for all Native American tribes, for instance. What is a symbol of health for one tribe may mean something totally different for another. Also, don’t make the mistake of lumping all communities of color together. The health issues facing the Asian community may not be the same as those affecting the Hispanic/Latino community. Even within specific communities, there are subgroups. The African community faces issues distinctly different than the African American community. The Asian, Hispanic/Latino, Black, and Native American communities are comprised of a multitude of different groups.

It’s also important to remember that not all people of color with fibromyalgia have had terrible pain management experiences simply because they are people of color.

* Names changed to protect privacy

Endnotes:
1. Natural Health for African Americans: The Physicians' Guide (Physicians' Guide to Healing) by Marcellus A. Walker and Kenneth B. Singleton; Grand Central Publishing (February 1, 1999) pp. 3-6.
2. Psychosomatic Medicine, March/April 2001.

Sabrina Dudley Johnson, BS, CJ, CLEO, is a former police officer disabled by injury-related fibromyalgia. Sabrina founded the Fibromyalgia Association Created for Education and Self-help [FACES, Inc.] in response to her experiences as an African American public safety worker with this chronic pain disorder. An all volunteer, 501 [c] [3], nonprofit organization located in Chicago, Illinois, FACES strives to build awareness of fibromyalgia through community partnerships, http://www.fibrocop.org/, a semi-annual video magazine, and speaking engagements. Sabrina is also a member of NFA’s Leaders Against Pain Coalition.

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