Over 90 percent of women with chronic pain feel the healthcare system discriminates against female patients, according to the results of a groundbreaking survey that also found many women feel there is a gender bias in the way their pain is treated by physicians.
Over 2,400 women responded to the online survey conducted by National Pain Report and For Grace, a non-profit foundation that held its annual Women in Pain conference Friday in Los Angeles.
“This is a wake-up call for people who take care of women in pain,” said Steve Passik, PhD, a psychologist and Vice President of Research and Advocacy for Millennium Health. “I think this survey is extraordinarily important, because I think the experiences of women in pain need to come out in the open and really need to be publicized.
“At times like now, when there’s a stigma to be a chronic pain patient and when there’s a stigma for taking controlled substances for pain, the last thing anyone needs is an additional unseen bias to make it worse. And the idea that women have a struggle that’s differentially worse is something that needs to come to light.”
When asked if the healthcare system (doctors, pharmacists, insurers, etc.) discriminates against female patients, nearly one out of four women (24%) said “usually or “always.” Sixty-seven percent said “sometimes” and only 9% said there was no discrimination.
“There seems to be an ‘Oh she’s so neurotic’ attitude towards female chronic pain patients,” is how one woman described her experience with the healthcare system.
“I am lucky to have a very good group of doctors taking care of me at this point but it took going through a fair amount of bad doctors to get to this point. I have felt discriminated against because of my gender. My feelings and pain minimized,” said another.
“I have seen many doctors… for my back pain and migraines and find that many of those doctors treat women as simple or stupid and direct questions or directions to male partners or friends,” wrote another woman.
Other feelings of gender bias uncovered in the survey include:
- 65% feel doctors take their pain less seriously because they are female.
- 84% feel they have been treated differently by doctors because of their sex.
- 55% feel more comfortable being treated by a female doctor.
- 49% feel female doctors understand their pain better than male doctors.
- 49% feel doctors are less inclined to prescribe an opioid pain medication to them because they are female.
While some doctors may be reluctant to prescribe opioids, nearly 60% of the women said they were currently using a narcotic painkiller – including 58% of the respondents who reported having fibromyalgia.
“Not only is that (number) high, but opioids don’t help fibromyalgia. In fact, there’s research that shows that it actually makes it worse,” said Beth Darnall, PhD, a pain psychologist and author of Less Pain, Fewer Pills.
“Opioids are often prescribed for conditions for which there is no scientific data to support their efficacy and in fact the downstream consequences can actually worsen the progression of that disorder. There’s data that supports that for fibromyalgia. Opioids should not be prescribed for fibromyalgia.”
Nearly 60% of the women surveyed said they had fibromyalgia, making it the most common condition reported. Back pain was a close second (59.6%), followed by migraine (34%), osteoarthritis (34%) and neuropathy (27%).
Many of the women said they had multiple chronic pain conditions – known as “comorbid” conditions – making their diagnosis and treatment that much more difficult.
“They say fibromyalgia; (but) the symptoms don’t fit. I have had the same type of symptoms for over 15 years. Nothing I have done has really helped. It just keeps getting worse gradually. I am waiting for the day when I can no longer walk,” wrote one woman.
“In addition to fibromyalgia and problems with both hips and lower back, I have severe Sjogren’s syndrome. Additionally I have been diagnosed with a very rare optic neuropathy,” said another.
“Central pain syndrome from nerve damage, occipital neuralgia, brachial neuralgia, broken heart from loss of loved career and inability to help with adopted grandson with disabilities,” wrote another.
“I was also in a car accident that was very traumatic. Where my head was sewn back together very tender to the touch some days,” said another woman.
Many of the women reported having traumatic experiences as children, ranging from emotional abuse to bullying to sexual abuse. Only 29% said they did not experience a childhood trauma.
Many chronic pain experts believe there is a link between childhood trauma and chronic pain conditions developed later in life.
“If you’re exposed to trauma and you’re a woman, you are more likely to subsequently develop chronic pain,” said Dr. Darnall. “Early life trauma can lead to biochemical changes in the body. It can turn on certain genes for instance. And if you have a genetic predisposition, you may be more likely to have those negative consequences manifest. Depression, for instance, or anxiety. You may acquire post-traumatic stress disorder (PTSD) from early childhood trauma.”
The survey did uncover some positive news for chronic pain patients. About 86% of the women said their husbands, boyfriends and/or partners were “usually” or “always” supportive of them as they coped with pain. Only 14% said their partners were “never” or “rarely” supportive.
“We nearly divorced in the first five years post diagnosis. My husband believed I was exaggerating/faking the daily pain in the early years. When he finally began researching my condition, he changed. He is so wonderfully understanding and kind now. For which I am so grateful,” wrote one woman.
“He does a lot for us, and has willingly taken on a number of responsibilities as my pain level has increased and mobility has decreased. Sometimes he gets grouchy/resentful, but he is generally amazing, and I’m very grateful for his support,” wrote another.
“Once I sent my son and my partner for deep tissue corrective massage they started to understand what was wrong with me and have been totally on board with helping me get healthy outside of Western medicine,” said one woman.
The survey did find that many women had tried alternative treatments for pain – ranging from massage to acupuncture to hypnosis. Most alternative treatments were only effective at relieving pain about a third of the time, but one therapy did stand out: Medical marijuana had an astounding 80% success rate among those who have tried it.
We’ll report more in-depth on that finding and other survey results in the days and weeks ahead.
To see the full results of the Women in Pain survey now, click here.
In previous online surveys, National Pain Report readers have told us how they are treated by their healthcare providers and they have rated the effectiveness of fibromyalgia drugs.