Women and people assigned female at birth* are commonly underdiagnosed, misdiagnosed, or medically gaslit into believing their complex medical symptoms are all in their head. In fact, women receive delayed diagnoses for even common conditions, and the waiting times for diagnoses of complex chronic conditions can be worse. Seeking necessary treatment and tests can be a traumatic ordeal, and the journey to a diagnosis can actually lead to worse health outcomes. During Disability Pride Month, we wanted to highlight some of these underdiagnosed conditions and the struggles of women who are disabled or living with chronic illness.
Keep reading to find out more about 5 chronic conditions that are more common in women and their common symptoms.
Rheumatoid Arthritis is an autoimmune inflammatory disease which causes inflammation of the joints. Contrary to popular belief, Rheumatoid Arthritis can onset at any age, not just in our older years. The lining of the joints become inflamed, causing lasting damage to the structure of the joints. Commonly affected joints include hands joints, knees, and wrists.
According to the CDC, Rheumatoid Arthritis can cause the following common symptoms:
- Pain or aching in more than one joint
- Stiffness in more than one joint
- Tenderness and swelling in more than one joint
- The same symptoms on both sides of the body (such as in both hands or both knees)
- Weight loss
- Fatigue or tiredness
Rheumatoid Arthritis is two to three times more likely to occur in women. In fact, 80% of people diagnosed with autoimmune diseases generally are women!
Ehlers Danlos Syndromes are a set of 13 genetic connective tissue disorders, which may cause joint hypermobility, skin hyperflexibility, and tissue fragility. The most common type of Ehlers-Danlos is Hypermobile Ehlers-Danlos Syndrome, with cases being as common as 1 in 3,100.
- Chronic Widespread Joint and Muscular Pain
- Chronic Fatigue
- Joint Subluxations or Dislocations
- Abnormal Scarring
- Gastrointestinal Issues
- Mast Cell Diseases
Around 80% of Ehlers-Danlos patients are assigned female at birth. Intriguingly, a recent study found that 61% of youth with Ehlers-Danlos syndrome identify as transgender or nonbinary or identify as living with gender dysphoria.
Hear From a Parent and Child with hEDS:
- Your Health Unlocked Episode 21: A Generational Story of Living with Ehlers-Danlos Syndrome is an intrafamily podcast episode highlighting the challenges of living with hEDS. The story is also a testament to how devastating it can be when you are not listened to, gaslit, and put on the sidelines by medical providers while managing a chronic illness.
Migraines are a type of headache characterized by frequent moderate to severe periods of throbbing or sharp pain on one or both sides of the head. The activation of the nerves within the wall of the brain and around the spinal cord causes them. They can be worsened by movement and can cause light and sound sensitivity. They frequently present with an “aura” or a change to vision following or during an attack.
The symptoms, length, and severity of migraine can vary from person to person. Here are the most common symptoms according to the NIH:
- Painful Headache
- Increased sensitivity to light, noise, and odors
The risk of developing migraines is 3.25 times more likely in women and is frequently associated with cyclical hormonal changes. It is also the 4th most common cause of disability in the US amongst women.
- Check out our June 2023 Health Pro Tips National Migraine Awareness Month section for recent articles, information, and health pro tips related to Migraines.
Lupus is an autoimmune inflammatory disorder affecting all systems of the body. Systemic Lupus Erythematosus (SLE) is the most common type of lupus, and the prevalence of all lupus types is currently being debated.
Symptoms of Lupus range and can be worsened by periods of flares or lessened during periods of “remission.” Common symptoms include:
- Fatigue or extreme exhaustion, no matter how much they sleep
- Muscle and joint pain or swelling
- Skin rashes (in particular, a butterfly-shaped face rash across the cheeks and nose)
- Hair loss
- Recurring mouth sores
Women are 4 to 12 times more likely to develop lupus than men. It is most common in people aged 15-42 and is more common In Latinae, Black, Asian, and Indigenous populations. Due to disparities caused by systemic racism and medical mistreatment, these populations are also more likely to have poor health outcomes.
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a chronic, underdiagnosed, and under-researched systemic disorder involving neurological, autonomic, and metabolic dysfunction. The source of the illness is currently unknown.
Due to a lack of sufficient study, not all of the symptoms of ME/CFS are known, and there is no known source of this illness. However, the CDC defines some common symptoms as listed below:
- Severe Chronic fatigue that is
- categorized by a significant drop in ability to activities that were possible before the onset of ME/CFS
- worsened following mental or physical activities or Post Exertional Malaise (PEM)
- Chronic sleep problems, including a lack of sleep or the inability to feel rested following sleep
- Muscle pain and aches
- Joint pain without swelling or redness
- Headaches, either new or worsening
90% of people who have ME/CFS have not been diagnosed. Due to this, exact sex and gender distributions are unclear, but it is believed that women are more likely to be at risk for developing ME/CFS, and it is diagnosed 2 to 4 times more often in women.
For more information on disabilities and chronic conditions, check out the Disability Pride Month Section of our July 2023 Health Pro Tips.
*It is important to note the distinction between women (all of those who are either cisgender or identify with womanhood) and people assigned female at birth but do not identify as women because both populations experience a higher incidence of these chronic conditions. Many chronic conditions stem from hormone production related to primary sex characteristics, and many trans and nonbinary people have found that their chronic conditions present differently while on gender affirming hormone therapy. The trans community is under-represented in clinical trials and studies, and for this reason the medical field still predominantly uses “women” to mean anyone assigned female at birth, regardless of the well documented variation and separation between gender and biological sex. We wanted to acknowledge this distinction and name that when we use “women” above, we are actually speaking about both populations.