Welcome back to the Bendy Club blog! Today, we’re addressing a tough but important topic: gaslighting in healthcare. Many with hypermobility spectrum disorder (HSD) or Ehlers-Danlos Syndrome (EDS) have experienced this frustrating phenomenon. We’ll share personal stories and practical advice to help you navigate and advocate for yourself.
Understanding Gaslighting in Healthcare
Gaslighting occurs when someone is made to doubt their reality or experiences. In healthcare, this can mean being dismissed or told that your symptoms are “all in your head.” It’s a common and harmful experience for those with invisible or poorly understood conditions like HSD and EDS.
Why This Matters
Experiencing gaslighting can lead to delayed diagnoses, inadequate treatment, and significant emotional distress. Understanding this issue and learning how to advocate for yourself is crucial for getting the care you need.
Real-Life Insights
Emily’s Journey:
Emily, a college freshman, was having severe neurological symptoms where half her body would become temporarily paralyzed. She went to a neurologist to discuss these issues and rule out possible causes, but unfortunately did not get the care she was hoping for. Instead she told me that the neurologist spent the entire 10 minute visit talking to her about the importance of safe sex. She was so shocked that this board certified neurologist was talking to her about this she didn’t know how to react. When she did finally ask about the spinal tap they had been discussing previously he said “You look to healthy for that”. Stories like these are all too common for young women with HSD and EDS.
Sarah’s Story:
Sarah, spent years battling unexplained pain throughout her body. Multiple doctors suggested fibromyalgia and depression as the causes. Despite her constantly telling them that she did not have any issues with sleep (a common symptom of fibromyalgia) they did not provide any other answers. Finally she brought up the possibility of hypermobility as a cause of her symptoms. Her rheumatologist did do a portion of the Beighton score and agreed that she was hypermobile, but then said she would need to see a geneticist to get diagnosed. The lack of even considering hypermobility as a diagnosis even with a board certified rheumatologist is something I hear all too often. That and the lack of understanding how to diagnose hEDS can make getting answers very difficult for patients.
Practical Advice for Dealing with Gaslighting
1. Trust Your Instincts:
- Your symptoms and experiences are real. Trust your body and feelings, even if others dismiss them.
2. Seek Support:
- Connect with support groups, either online or in-person. Shared experiences can validate your feelings and provide practical advice.
3. Document Everything:
- Keep detailed records of your symptoms, appointments, and any dismissive comments. Documentation can help in finding patterns and advocating for yourself.
4. Educate Yourself:
- Knowledge is power. Understand your condition and potential treatments. This helps in having informed discussions with healthcare providers.
5. Find the Right Doctor:
- Not all doctors understand HSD/EDS. Look for specialists with experience in connective tissue disorders. It may take time, but finding the right fit is essential.
6. Bring a Support Person:
- Having a friend or family member accompany you to appointments can provide emotional support and help in advocating for your needs.
7. Practice Self-Care:
- Dealing with gaslighting is emotionally draining. Engage in activities that promote well-being and reduce stress.
Empowering Yourself
Advocate Effectively:
- Use clear and specific language to describe your symptoms and experiences. Be persistent yet polite. Remember, you have the right to be heard and treated with respect.
Seek Second Opinions:
- If you feel dismissed or unheard, don’t hesitate to seek another opinion. Finding a compassionate and knowledgeable healthcare provider can make a significant difference.
Share Your Journey
We encourage you to share your experiences and connect with others on our social media platforms. By building a supportive community, we can help each other navigate the challenges of living with HSD and EDS.
Connect with Us
Follow us on social media for more tips, updates, and support:
Ready to Take the Next Step?
For those seeking personalized guidance, our 1-on-1 coaching program offers tailored support to address your specific needs. With expert advice and a comprehensive plan, you’ll gain the tools and confidence to manage EDS effectively. Learn more and sign up here.
Thank you for being part of the Bendy Club. Together, we can make a difference!
Warm regards,
The Hypermobile Solutions Team
References
Godman, H. (2024, April 1). What to do about medical gaslighting. Harvard Health. https://www.health.harvard.edu/staying-healthy/what-to-do-about-medical-gaslighting
Home. The Ehlers Danlos Society. https://www.ehlers-danlos.com/
What is HSD?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-hsd/
What is eds?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-eds/
Jovin, D., Atwal, P., Herman, K., Block, N., Maxwell, A. J., Mitakides, J., Maitland, A. M., Saperstein, D., Hamilton, M., Schofield, J., Koby, M., Klinge, P., McElroy, A., Bluestein, L., Chopra, P., Tishler, J., Pocinki, A. G., Varga, J., Dempsey, T., … Lane, K. (2020). Disjointed: Navigating the diagnosis and management of Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Hidden Stripes Publications, Inc.
Smith, C., & Wicks, D. (2017). Understanding Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder: (previously known as Ehlers-Danlos Syndrome Hypermobility Type & Joint Hypermobility Syndrome, respectively). Redcliff-House Publications.
Cox, C. (2022). Holding it all together when you’re Hypermobile. Journey2Joy
Disclaimer
This blog is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no provider/patient relationship is formed. The use of information on this blog or materials linked from this blog is at the user’s own risk. The content of this blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.