Welcome back to the Bendy Club blog! This week, we’re addressing a particularly challenging and often overlooked issue: gaslighting by healthcare providers with EDS and HSD. If you’ve ever been dismissed or told that your symptoms are “all in your head,” you’re not alone. Let’s explore what gaslighting is, how it affects you, and how to empower yourself in these situations.
What is Gaslighting in Healthcare?
Gaslighting in healthcare occurs when medical professionals dismiss, trivialize, or question a patient’s symptoms, making them feel misunderstood or doubted. This can be particularly harmful for individuals with hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndrome (EDS), whose symptoms can be complex and difficult to diagnose.
Why This Matters
Gaslighting can lead to delayed diagnoses, inadequate treatment, and emotional distress. It’s crucial to recognize this behavior and take steps to advocate for your health and well-being. Remember, your experiences and symptoms are valid, and you deserve to be heard and treated with respect.
Recognizing Gaslighting
Gaslighting can be subtle or overt. Here are some common signs:
- Dismissive Comments: “You’re just stressed,” or “It’s all in your head.”
- Minimizing Symptoms: “Everyone gets tired,” or “That pain isn’t that bad.”
- Blaming the Patient: “If you just lost weight/exercised more, you’d feel better.”
- Ignoring or Overlooking Symptoms: Repeatedly not acknowledging your reported symptoms or concerns.
Action Steps for Empowerment
- Document Everything: Keep detailed records of your symptoms, treatments, and interactions with healthcare providers. This can help you provide concrete evidence and track patterns over time.
- Seek Second Opinions: Don’t hesitate to get another perspective if you feel unheard. Different doctors may have different approaches and insights. Many doctors are unaware of HSD/EDS and the wide array of symptoms that can be involved.
- Bring an Advocate: Having a trusted friend or family member with you can provide emotional support and help ensure your concerns are taken seriously.
- Educate Yourself: Knowledge is power. Learn as much as you can about HSD and EDS. The more informed you are, the better you can advocate for your needs. That’s our goal here at Hypermobile Solutions!
- Practice Assertiveness: Be clear and firm about your symptoms and concerns. It’s okay to insist on being heard and to ask questions about your treatment.
- Have Specific Goals: When working with a provider who is not well-versed in HSD/EDS, it’s crucial to approach your appointment with a specific goal in mind. Are you looking to diagnose a new problem, discuss treatments for an existing issue, or get a referral to a specialist? Be clear about your objectives. If you walk into an appointment and mention that everything hurts all the time, you have GI problems, you’re passing out regularly, and you suspect an autoimmune disease, the provider may become overwhelmed and unsure where to start. Having clear, focused goals will help you make the most out of your visits.
- Find Supportive Healthcare Providers: Look for medical providers who specialize in or are knowledgeable about HSD and EDS. Patient communities and support groups can often provide recommendations. The Ehlers-Danlos Society website has a directory you can look up, or many times Facebook groups and other forums can give feedback on good providers in your area.
Patient Story
Emily, a member of our community, spent years being told by various doctors that her chronic pain and fatigue were due to fibromyalgia and depression. Feeling unheard, she finally sought out a specialist in connective tissue disorders. After a thorough evaluation, Emily was diagnosed with HSD. Finally having an answer to her wide ranging symptoms was incredibly empowering and made her feel finally heard. Now she is able to move forward and improve her quality of life with proper treatment. Emily’s story highlights the importance of finding the right healthcare providers and advocating for yourself.
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
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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 and live your best life. 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
Healthcare Professional Directory Archive. The Ehlers Danlos Society. https://www.ehlers-danlos.com/healthcare-professionals-directory/
Ng, I. K., Tham, S. Z., Singh, G. D., Thong, C., & Teo, D. B. (2024). Medical gaslighting: A new colloquialism. The American Journal of Medicine. https://doi.org/10.1016/j.amjmed.2024.06.022
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/
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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.