Welcome back to the Bendy Club blog! Today, we’re tackling a challenge many people with invisible illnesses face: responding to comments like “You don’t look sick.” These words can sting and leave you feeling misunderstood. Let’s explore how to handle these moments ensuring you feel empowered and validated.
Why This Matters
Comments like “You don’t look sick” can be dismissive and invalidate your experience. It’s crucial to have strategies to respond effectively, maintaining your dignity and educating others about invisible illnesses like Hypermobility Spectrum Disorder (HSD) and Ehlers-Danlos Syndrome (EDS). These comments are especially difficult when coming from health care providers who are supposed to be the ones to help you through difficult times.
Effective Responses to “You Don’t Look Sick”
1. Educate with Empathy
- Gently explain that many illnesses, including HSD and EDS, are invisible. Share that just because symptoms aren’t visible, it doesn’t mean they aren’t real or impactful. Be aware that HSD and EDS are not wildly known both in the general public but also in the medical world. Knowledge about these diseases is not going to happen on its own so educating those around you can help spread the word that these diseases do exist and are actually more common than people realize.
2. Use Analogies
- Comparisons can help others understand. For example, “Just like you can’t see a headache, you can’t see my pain and fatigue.” Another example would be “Hypermobility is similar to someone with arthritis in their joint. You may not be able to see it but you know it causes pain.”
3. Set Boundaries
- If you’re uncomfortable discussing your health, it’s okay to set boundaries. You might say, “I prefer not to discuss my medical issues right now, but thank you for your concern.”
4. Share Personal Stories
- Sometimes sharing a brief personal story can help others understand your experience better. Personal anecdotes can make your condition more relatable.
5. Stay Positive
- Responding with positivity can defuse potential negativity. You might say, “Thank you for noticing! I work hard to manage my condition and look my best.”
Action Steps for Building Confidence
1. Know Your Condition
- The more you know about HSD and EDS, the more confidently you can discuss them. Educate yourself so you can educate others.
2. Practice Responses
- Prepare and practice responses to common questions and comments. This will help you feel more confident when these situations arise.
3. Build a Support Network
- Surround yourself with people who understand and support you. Join online communities and local support groups.
4. Seek Professional Help
- Consider speaking with a therapist who can help you develop strategies for coping with insensitive comments and building self-confidence.
5. Focus on Self-Care
- Prioritize activities that boost your self-esteem and well-being. This can help you feel stronger when facing criticism or misunderstanding.
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 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
What is an invisible disability?. Invisible Disabilities® Association. (2024, May 4). https://invisibledisabilities.org/what-is-an-invisible-disability/
Sussex Publishers. (n.d.). 3 ways to deal with emotionally invalidating people. Psychology Today. https://www.psychologytoday.com/us/blog/social-instincts/202304/3-ways-to-deal-with-an-emotionally-invalidating-person
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.