Though they may seem fine, many women silently suffer from illnesses that can significantly impact their lives — but they aren't getting the attention they deserve.
When it comes to your health, it’s your right to fight for it because you are your biggest advocate. In Shondaland’s Women’s Health series this month, we’re offering insight and advice on how women can take their physical and mental well-being into their own hands so they can lead happy, healthy lives.
In her recent book, The Invisible Kingdom: Reimagining Chronic Illness, Meghan O’Rourke details how, in her early 20s, she began experiencing an onslaught of symptoms that seemingly developed out of nowhere: hives, night sweats, dizziness, chronic pain, fatigue. Over the course of a few years, these symptoms often came, went, and then came again, leaving O’Rourke not just confused about what exactly was going on in her body, but sometimes unable to even control it.
Eventually, she learned that the root cause of her symptoms was Lyme disease, which led her to begin an investigation into the chronic illnesses that plague many women, many of which are autoimmune related. “I think what surprised me initially,” she told Shondaland, “was to realize that what I had taken to be unique to my experience, which is to say this period of trying to get a diagnosis after I got mysteriously unwell, searching for answers and searching for doctors to take me seriously, which at the time felt like my own problem, like some problem with me … [and] to realize just how prevalent this was and how many millions of others were going through similar experiences, especially young women who have autoimmune diseases.”
The Invisible Kingdom: Reimagining Chronic Illness
It’s no wonder it took O’Rourke so long to get a diagnosis. Betty Diamond, MD, is the chair of the National Scientific Advisory Board for the Autoimmune Association and the head of the Center for Autoimmune, Musculoskeletal, and Hematopoietic Diseases at the Feinstein Institutes for Medical Research in Manhasset, New York. Diamond says, according to an ARNet (Autoimmune Research Network) survey of around 23,000 patients, it takes an average of 4.5 years to achieve a diagnosis and an average of four different physicians. Based on National Institutes of Health data using statistics of 23.5 million as the total number of diagnosed autoimmune patients, approximately 20 million women nationwide suffer from an autoimmune or immune-mediated condition. At any given time, millions more suffer without a firm diagnosis. Some of these diseases, such as lupus, disproportionately affect women of color.
The Autoimmune Association lists more than 100 autoimmune diseases, but according to the Johns Hopkins website, the most common are:
Rheumatoid arthritis, a form of arthritis that attacks the joints
Psoriasis, a condition marked by thick, scaly patches of skin
Psoriatic arthritis, a type of arthritis affecting some people with psoriasis
Lupus, a disease that damages areas of the body that include joints, skin, and organs
Thyroid diseases, including Graves’ disease, in which the body makes too much thyroid hormone (hyperthyroidism), and Hashimoto’s thyroiditis, in which it doesn’t make enough (hypothyroidism) of the hormone
There’s also a growing prevalence of invisible diseases, including:
Allergies
Digestive disorders, like Crohn’s disease and irritable bowel syndrome
Lyme disease
Diabetes
Chronic fatigue syndrome
Fibromyalgia
Recent research indicates that long Covid may be an autoimmune condition, which will boost those already alarming totals considerably.
Despite the varying types of autoimmune disease, many of them share similar symptoms. Common symptoms of autoimmune disease include:
Fatigue
Joint pain and swelling
Skin problems
Abdominal pain and digestive issues
Recurring fever
Swollen glands
If so many people are out there suffering, why does it still take so long to get a diagnosis? And why don’t doctors generally address the possibility of an autoimmune disease or an invisible disease at wellness visits if they spot the signs?
There is a continuing need for more precise diagnostics for most autoimmune diseases. Women are often dismissed or misunderstood.
Catherine McQueen//Getty Images
The answers to these questions begin with the fact that as many as 80 percent of those who suffer from these conditions are women and that gender bias is an ongoing issue in medicine. From research to your office visit to simply telling a doctor you’re in pain, women, especially Black women and other women of color, face the burden of often not being listened to or believed when they discuss symptoms or medical issues with their health-care providers.
This circles back to the challenges female patients often face in getting a diagnosis. Further complicating the diagnosis phase is the fact that autoimmune diseases are also frequently referred to as invisible diseases because a simple checkup by a doctor doesn’t always reveal conclusive signs that a patient is actually suffering from a specific condition.
“Autoimmune patients are often told that they don’t ‘look sick,’” says Diamond. “Because they don’t have symptoms that are always outwardly visible, many autoimmune patients feel frustrated that their symptoms aren’t validated by doctors, family, friends, and coworkers. This is part of the reason why it can be hard to get a diagnosis. Without physical symptoms, many patients’ concerns are dismissed.” As many as 96 percent of people with chronic medical conditions live with a condition that is invisible, according to the independent health and disability news source Disabled World.
Yet many of these conditions can cause what the medical community refers to as comorbidities, or other health conditions that can impact your overall health. For example, those who suffer from rheumatoid arthritis have an increased risk of cardiovascular disease, and women suffering from endometriosis are more likely to face diabetes and chronic liver disease.
This is why it’s so important to pinpoint what your body is dealing with. Diamond says a diagnosis is challenging because there is no one test for the diagnosis of autoimmunity, and the tests that do exist can be inconclusive, among other issues.
“Diagnosis is difficult because many symptoms can be the result of other common diseases,” she explains. “These are complex diseases that span many specialists, and there is an overall need for coordinated care. There is a continuing need for more precise diagnostics for most autoimmune diseases. Women are often dismissed or misunderstood. Many people face barriers to accessing care, particularly in rural or lesser-served areas. Patients without medical insurance are disadvantaged by a lack of access to specialists. Sometimes there is more focus on treating symptoms than understanding root causes.”
Further complicating things are the lack of “cookie cutter” symptoms that present with autoimmune conditions, says Francine I. Hippolyte, MD, an attending physician and vice chair of clinical operations in the department of obstetrics and gynecology at Northwell Health in Manhasset, New York. “Not everyone fits the same mold. You complain of fatigue, but you just had a baby, right? You have four children, and you’re working. So, what does that fatigue mean? Clearly, you know yourself and know if something’s different, but so many things can be explained away.”
Doctors who “explain away” can keep someone who is suffering from getting the proper diagnosis for years, as was the case for O’Rourke. Women in general face challenges when seeking a diagnosis and oftentimes fight to be heard, says Diamond, adding that 33 percent of ARNet respondents reported being told that they were “overly concerned” about their health.
Doctors who “explain away” can keep someone who is suffering from getting the proper diagnosis for years.
PhotoAlto/Ale Ventura//Getty Images
One utterly disappointing 2018 study found that men presenting with chronic pain were often referred to as “brave,” while women presenting with chronic pain were referred to as “emotional.” “Gender blindness can lead to women’s needs being overlooked, as seen in coronary heart diseases,” the study reads. Such neglect and overt dismissal can make it difficult for a woman to press on in search of answers.
That’s why Hippolyte says it’s important to go with your gut about how you feel your practitioner is receiving your information. “Even though there are great advances in science and technology, the answer may not be there clearly. But your doctor should be listening with sincerity and trying to work with you to figure out what the next steps should be, whether it’s figuring out your next steps for diagnosis or next steps for treatment,” she says. “I’ve said this to the residents I train when they see patients who come into the emergency room — do you know how much it takes for a woman to leave her home and come in here? Being dismissive is not the approach to take with anyone who isn’t feeling well and knows something is wrong.”
If you suspect you might have an invisible or autoimmune disease, your family tree might provide some clues. “It is common for autoimmune diseases to cluster in individuals and families, but the family correlation may not be as simple to detect because it can present differently among family members,” Diamond explains. “For example, someone living with lupus may have a sister with celiac disease and another family member with rheumatoid arthritis. We are still exploring the science behind this, but such is the case that many genes that increase risk for one autoimmune disease can also increase risk for another. Rheumatoid arthritis, multiple sclerosis, autoimmune thyroiditis, and Sjögren’s syndrome commonly appear with a second autoimmune disease. Others are known for clustering together, such as celiac and type 1 diabetes, because they share predisposing genes, which are also called risk alleles.”
Another source of information and support can be found from others in the autoimmune community, says Diamond. “Knowing that you’re not alone can help you feel empowered to advocate for yourself and keep searching for answers,” she says. She also recommends bringing a list of questions to your doctor, seeking out second opinions, staying the course in your own quest, and switching providers if you don’t feel like you’ve been heard.
In the meantime, she recommends the following coping strategies to help ease your frustrations:
Give yourself grace
Empower yourself with knowledge
Become your own best advocate
Remember, it’s okay to not feel okay
Enlist your physician as your ally in your journey
Find a support community, such as an online group, fellow patients on the journey, or friends and family who have experienced a similar event in their lives
Don’t be afraid to ask for help
Communicate your needs with loved ones and enlist their support
Know that you are not alone
As far as where the research is headed in autoimmune diagnosis, interestingly enough, in 2020 researchers found a significant increase of antinuclear antibodies — the most common biomarker of autoimmunity in the United States — in males, non-Hispanic whites, adults 50 years and older, and adolescents. Given that male medical issues are significantly more researched and funded than those of women (for example, erectile dysfunction, which affects 19 percent of men, is five times more researched than premenstrual syndrome, which affects 90 percent of women), and because men are also facing challenges with invisible disease, it will perhaps finally inspire an increase in funds toward the overall research of autoimmune diseases and, ultimately, the equitable treatment of women in the medical community.