Hello everyone,
At MKGenetix, we understand that individuals living with rare or underrecognized conditions like Ehlers-Danlos syndrome (EDS), Loeys-Dietz syndrome, and other connective tissue disorders (CTDs) often face more than just medical symptoms—they face a healthcare system that sometimes doesn’t believe them. One of the most challenging and under-discussed barriers to care for this population is medical gaslighting. In this blog post, we’ll unpack what medical gaslighting is, why it happens so frequently to people with CTDs, and how genetic counseling can offer validation, clarity, and support.
What Is Medical Gaslighting?
Medical gaslighting occurs when a healthcare provider dismisses or minimizes a patient’s symptoms, often attributing them to anxiety, stress, or exaggeration. You might hear things like:
- “You’re just anxious.”
- “You’re too young to be in pain.”
- “All your tests are normal—there’s nothing wrong.”
Over time, this can erode a person’s confidence in their own experiences and make them hesitant to seek further care—even when their symptoms worsen.
Why Is This So Common in Connective Tissue Disorders?
Connective tissue disorders like hEDS, vEDS, and Loeys-Dietz often involve:
- Widespread but invisible symptoms (chronic pain, fatigue, joint dislocations)
- Fluctuating or hard-to-measure manifestations
- Long diagnostic journeys (sometimes 10+ years)
- Normal-looking labs and imaging, especially early on
- Limited physician training in rare conditions
As a result, patients are frequently told their experiences are “normal” or “psychosomatic,” even when their symptoms are serious and life-limiting. This is particularly common in young women, people of color, and other marginalized groups.
The Impact of Not Being Believed
When medical professionals question or ignore symptoms, the psychological toll can be severe. Patients may feel isolated, ashamed, or even begin to doubt themselves. Delayed diagnoses are not just emotionally damaging—they can lead to missed opportunities for early intervention, pain management, cardiac monitoring, and appropriate referrals to specialists.
How Genetic Counseling Can Help
At MKGenetix, we aim to create a validating, patient-centered space. For individuals navigating CTDs, our role often includes:
- Listening without judgment. We take your full story seriously, even when it doesn’t “fit the textbook.”
- Identifying patterns. We can help evaluate whether your symptoms may align with known genetic conditions.
- Offering appropriate testing. If a connective tissue disorder is suspected, we can guide you through genetic testing options, what they can (and can’t) reveal, and what a negative result means.
- Supporting your care team. We provide clear summaries and letters to help advocate for further referrals, accommodations, or surveillance.
- Empowering you. We give you tools and language to advocate for yourself—at doctor visits, with insurance, and within your own family.
You’re Not Alone
If you’ve been told “you’re fine” but still feel like something is wrong, you’re not imagining it—and you’re not alone. Many individuals with CTDs have walked this difficult path, and your experience deserves recognition and support. A diagnosis—whether clinical or genetic—is not always quick or easy, but it can be a turning point toward better care and a better quality of life.
How Can MKGenetix Help?
At MKGenetix, we are committed to helping patients with connective tissue disorders find answers and reclaim confidence in their care. Our virtual genetic counseling services offer compassionate, judgment-free support tailored to you and your family’s needs. Whether you’re navigating symptoms without a clear diagnosis or following up on known genetic findings, we’re here to guide and advocate with you.
If you or a loved one has experienced medical dismissal or suspect a connective tissue condition, reach out—we’re here to listen and help you move forward.
Warm regards,
Megan Trinkle-Knotts, MS, CGC
Certified Genetic Counselor
Founder, MKGenetix
Images may be AI Generated