Women’s pain is frequently dismissed by friends, family, and even the medical community — and we’re more likely than men to experience autoimmune illnesses. This creates the perfect storm for serious diseases to go undiagnosed and untreated, which is why multiple sclerosis is a feminist issue.
Seventy-five percent of people with autoimmune illnesses are women, and on average patients see four doctors over a period of three years before they are diagnosed and treated. Part of the issue is that symptoms like fatigue and body pain (some of the most common signs of an autoimmune illness like MS) are frequently chalked up to stress, busy schedules, and the elusive quest to “do it all.” But even when we do find a doctor who takes us seriously, it can be difficult to nail down an exact diagnosis.
“Many [MS] symptoms, including tingling, pain, and fatigue, can easily be attributed to more common etiologies and patients are often given the wrong advice or referred to the wrong specialty,” Dr. Leslie S. Saland, MD, a neurologist at CareMount Medical tells SheKnows.
Saland explains that there isn’t one diagnostic test for MS — rather, the way to obtain a diagnosis is by having a neurologist with knowledge of MS interpret criteria so that other possible etiologies can be excluded. “Unfortunately, there is a real shortage of neurologists at the moment and it can take weeks in some cases to get an appointment for a consultation,” she says.
Dr. Timothy West, a neurologist at University of California, San Francisco, explains that in order to secure an MS diagnosis, the process involves a thorough medical history, physical examination, imaging studies, and lab studies (on both blood and possibly spinal fluid). “If you have concern for MS as the cause of your symptoms, the best course of action is to ask your doctor to investigate,” West advises.
Kathleen Costello, MS, CRNP, MSCN, and Associate VP of Healthcare Access at the National MS Society tells SheKnows that it’s important to note that no two women will experience the disease in the same way. However, she says that some common early symptoms experienced by women in particular are numbness and tingling in the arms or legs; visual symptoms such as blurring, dim vision, or double vision; a significant increase in fatigue level; and a change in balance or coordination. “If women experience any of these symptoms, and the symptoms have persisted beyond 24 hours or are worsening, they should discuss them with their healthcare provider,” Costello says.
But what happens if your healthcare provider dismisses your symptoms and chalks them up to stress or simply the result of your busy schedule? Costello tells SheKnows that, because it’s known that women are more likely to develop MS than men, she believes healthcare providers are less dismissive than they once were.
But dismissiveness does still occur. Findings published in an article in The New England Journal of Medicine found that doctors are less likely to treat women’s pain and a study published in Academic Emergency Medicine reached the same conclusion. Seventy percent of chronic pain patients are women, but 80 percent of pain studies are conducted on male mice or human men. And when women go to the hospital due to pain, they are more likely than men to be given anti-anxiety medications. All of this feeds into the tired “hysterical woman” trope that leaves women undiagnosed — or diagnosed with a mental illness rather than a physical one.
“The best advice is to not take no for an answer,” West says. “In our medical system we all have to advocate for ourselves. If this is a concern, studies can be readily done to help answer the question and it is not wrong to ask for these studies to be done.”
As previously noted, the majority of patients with autoimmune illnesses see more than one doctor before they’re diagnosed — so don’t be afraid to find a new provider if your current one is not taking your symptoms seriously. “Doctors are like medicine; one size does not fit all and we all have our ‘side effects,”” West says. “If you feel you’re not getting the correct care from your current doctor, it is completely acceptable to seek a second opinion.”
When you’re dealing with a chronic illness, it’s exhausting and unfair to be tasked with advocating for yourself and proving the seriousness of your symptoms. But until women’s pain is taken as seriously as men’s, it may often prove to be an unfortunate necessity.