Hypermobile and Misunderstood The Overlooked Struggle of Women with Ehlers-Danlos Syndrome

Imagine navigating life with chronic pain, fatigue, and frequent injuries, all while feeling dismissed or misunderstood by healthcare professionals. This is the reality for many women with Ehlers-Danlos Syndrome (EDS), a group of connective tissue disorders that affects collagen production. One of its most common types, hypermobile EDS (hEDS), presents unique challenges, from frequent joint dislocations to debilitating fatigue.

What makes this struggle even harder is that hypermobile EDS often goes undiagnosed or misdiagnosed, leaving many women without the care they need. Worse still, societal biases about pain perception in women only exacerbate these struggles.

The good news? Integrative medicine is beginning to offer new approaches to support individuals living with EDS. By combining conventional and holistic practices, this approach targets the root causes of symptoms, helping to improve quality of life.

Let's take a closer look at the challenges women with EDS face and explore how integrative medicine provides a promising path for better care.

What Is Hypermobile Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is a group of genetic connective tissue disorders that weaken collagen, a protein responsible for holding the body together and supporting its structure. Hypermobile EDS is the most common type. While it doesn’t always have genetic markers easily identifiable through tests, its symptoms are striking. These include:

Joint Hypermobility: Extended range of motion, leading to frequent dislocations, subluxations (partial dislocations), and joint pain.
Chronic Pain: Persistent pain in muscles and joints, often worsened by repetitive motions or prolonged inactivity.
Skin Fragility: Stretchy, bruising-prone skin that takes longer to heal.
Gastrointestinal Issues: From irritable bowel syndrome (IBS) to gastroparesis, digestive problems are common.
Autonomic Dysfunction: Symptoms like dizziness, fainting, and rapid heart rate can result from dysautonomia, commonly overlapping with EDS.

What makes hEDS particularly frustrating is the lack of biomarkers for diagnosis (1). Doctors often rely on patient histories and clinical evaluations, which can lead to delays in diagnosis or dismissal of symptoms.

Why Are Women Overlooked?

Women represent the majority of EDS patients, but symptoms and experiences are frequently invalidated by conventional healthcare providers. This happens for several reasons, including:

Bias in Pain Perception

Studies consistently show that women’s pain is taken less seriously than men’s (2). Many female patients with EDS report being labeled as "dramatic" or having their symptoms written off as anxiety.

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Overlapping Conditions

hEDS rarely exists in isolation. Many women experience co-occurring conditions, such as fibromyalgia, chronic fatigue syndrome (CFS), or autoimmune disorders (3). These overlapping conditions muddy the diagnostic waters, leading to years of misdiagnoses.

Lack of Education Among Healthcare Providers

Despite its prevalence, EDS remains largely misunderstood among general practitioners. Few doctors receive adequate training in connective tissue disorders, leaving patients to advocate for themselves.

The consequences are devastating—not only physically but emotionally. Women with undiagnosed or mismanaged EDS often feel unheard, isolated, and burned out from navigating a healthcare system that seems to dismiss them.

Read: Why MCAS Patients Are Often Misdiagnosed—Links to EDS, POTS, & Histamine

How Integrative Medicine Can Improve EDS Care

Integrative medicine offers a more comprehensive approach by blending conventional treatments with holistic therapies tailored to the patient’s unique needs. People with EDS often require multifaceted care, making this approach ideal. Here’s how it works:

1. Focus on Pain Management

Managing chronic pain is a top priority for people with hEDS. Integrative medicine incorporates evidence-based options like physical therapy and non-opioid medications with complementary treatments, such as acupuncture, yoga, and mindfulness meditation.

For example, research has shown that practices like gentle yoga can improve joint stability and flexibility while reducing pain. Acupuncture further addresses inflammation and pain pathways, offering a holistic avenue for relief (4).

2. Addressing Gastrointestinal Health

Digestive issues often fly under the radar in hEDS care, despite significantly impacting quality of life. Integrative approaches target gut health through tailored nutrition plans, probiotics, and stress management techniques that calm the gut-brain axis.

Nutritionists specializing in chronic illness can work alongside physicians to create anti-inflammatory diets that alleviate symptoms without worsening energy deficits.

3. Strengthening Musculoskeletal Health

Joint instability is one of the most disabling symptoms of hypermobile EDS (5). Standard treatments like bracing or physical therapy are effective, but integrative care takes it further. This includes strength rehabilitation programs, pilates, and bodywork therapies like craniosacral therapy, which may reduce tension while improving mobility.

4. Incorporating Mind-Body Practices

Many patients with hEDS grapple with anxiety and depression, often exacerbated by the invalidation they feel during their healthcare journeys (6). Integrative practices like cognitive behavioral therapy (CBT), guided imagery, and biofeedback address these emotional challenges while enhancing overall resilience.

5. Long-Term Care Planning

Integrative medicine emphasizes preventative care and long-term management, rather than band-aid solutions. Patients work collaboratively with care teams to create wellness plans that consider their unique symptoms, limitations, and goals.

Integrative Women’s Healthcare

Now seeing patients in Atlanta, New York, LA, and virtually, our team of compassionate and knowledgeable providers offers integrative women’s healthcare to address a range of issues, including hormonal imbalances, chronic pain, anxiety and depression. Patients can expect personalized treatment plans that combine traditional medicine with alternative therapies such as acupuncture, massage therapy, and mind-body practices like yoga and meditation.

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With the aim of empowering women to take control of their health and well-being, our team focuses on innovative & functional treatments. We believe in treating the root cause of symptoms rather than simply masking them with medication, leading to long-term relief and improved overall wellness.

Prioritize Comprehensive and Compassionate Care

Living with hypermobile Ehlers-Danlos Syndrome is undoubtedly challenging, but the rise of integrative medicine offers hope. A combination of conventional care and supplemental therapies can address the diverse needs of EDS patients, improving their quality of life and empowering them to manage their symptoms with greater confidence. Don’t wait until you’re facing a health crisis to start taking care of yourself. Our integrative healthcare approach emphasizes prevention and proactive wellness strategies, helping you stay healthy and vibrant at every stage of life.

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About
the author

Dr. Tasneem Bhatia, MD, is a board-certified physician, specializing in integrative and emergency medicine, pediatrics and prevention, with expertise in women’s health, weight-loss and nutrition. She is the author of "The Hormone Shift", “What Doctors Eat” and “The 21-Day Belly Fix.”

Blog Reviewed By:

Dr. Taz Bhatia, M.D.

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