Welcome back to the Bendy Club blog! This week, we’re tackling a common and harmful misconception: “It’s all in your head.” For those with Hypermobility Spectrum Disorder (HSD) or Ehlers-Danlos Syndrome (EDS), this phrase can undermine your experiences and invalidate your struggles. Understanding and addressing this misconception is crucial for your mental and physical health.
Why This Misconception Matters
Being told that your symptoms are “all in your head” can be incredibly frustrating and discouraging. This misconception not only invalidates your experiences but can also delay proper diagnosis and treatment, leading to prolonged suffering and unnecessary stress.
The Reality of HSD and EDS
HSD and EDS are complex, multi-systemic conditions that affect connective tissues throughout the body. Symptoms can include joint pain, chronic fatigue, gastrointestinal issues, cardiovascular symptoms, and more. These are real, physical manifestations of the disorders, not figments of your imagination.
Understanding the Misconception
The misconception often arises because the symptoms of HSD and EDS vary widely and are many times invisible. Healthcare providers likely lack the knowledge or experience to recognize these conditions, leading to misdiagnosis or dismissal of symptoms as psychological. Health care professionals likely learned that EDS is a very rare genetic disease with severe complications, and they know nothing about HSD. It is also true that many diseases that medical professionals are taught about in school, like hypochondria or Munchausen syndrome, result in patients coming to the office reporting that everything is wrong with them. The combination of these things results in many hypermobile patients having their symptoms dismissed as being nothing more than anxiety.
Action Steps to Address the Misconception
1. Educate Yourself and Others
- Arm yourself with knowledge about HSD and EDS. Understanding your condition empowers you to advocate for yourself effectively.
2. Seek Out Knowledgeable Healthcare Providers
- Find doctors and specialists who are familiar with HSD and EDS. They can provide the validation and appropriate care you need.
3. Document Your Symptoms
- Keep a detailed record of your symptoms, including their frequency, intensity, and triggers. This can help healthcare providers understand your condition better.
4. Build a Support Network
- Connect with others who have HSD and EDS. Sharing experiences and advice can provide emotional support and practical tips.
5. Communicate Clearly and Assertively
- When speaking with healthcare providers, be clear and assertive about your symptoms and experiences. Don’t be afraid to seek a second opinion if you feel your concerns are being dismissed.
Real Stories, Real Solutions
Emily’s Journey
Emily was often told by doctors that her symptoms were psychosomatic. After years of frustration, she found a specialist who recognized her symptoms as part of EDS. With a proper diagnosis and treatment plan, Emily’s quality of life improved significantly. Finding the right provider can change everything.
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. How long did it take you to get diagnosed? What were doctors telling you was wrong with you before you got diagnosed with HSD/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 your condition 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.