Welcome back to the Bendy Club blog! This week, we’re tackling a topic that hits close to home for many of us: dealing with comments like “You look fine.” These seemingly harmless words can feel dismissive and invalidating, especially when you’re managing an invisible illness like HSD or EDS. Let’s explore how to cope with these comments and find strength in understanding and self-compassion.
Why Comments Like “You Look Fine” Hurt
Hearing “You look fine” can be frustrating because it dismisses the real, often debilitating symptoms that aren’t visible on the outside. This can make you feel misunderstood and isolated. Remember, just because you don’t look sick doesn’t mean you aren’t dealing with significant challenges.
The Impact of Invisible Illness
- Validation Matters: People with invisible illnesses often crave validation for their experiences. When symptoms aren’t visible, it’s easy for others to underestimate the severity of your condition.
- Emotional Toll: Constantly explaining and justifying your health issues can be exhausting and emotionally draining.
- Isolation: Feeling misunderstood can lead to a sense of isolation and loneliness, making it even harder to cope with your condition.
Finding Strength in Understanding
- Educate Others: Take the opportunity to educate friends and family about HSD and EDS. Share resources, articles, and personal experiences to help them understand your reality.
- Practice Self-Compassion: Be kind to yourself. Recognize that you are doing your best, and it’s okay to have limitations. Self-compassion can be a powerful tool in managing emotional stress.
- Set Boundaries: It is okay to set boundaries with those who are dismissive or unkind. Surround yourself with supportive people who understand and respect your journey.
- Use Your Voice: Advocate for yourself. Don’t be afraid to explain how you feel and what you need. Your voice is powerful, and advocating for your health is crucial. Please try to be respectful when doing this. HSD and EDS are completely unknown by the general public so they are likely just uneducated on what you are going through instead of intentionally trying to discredit your experience.
- Find Support: Join support groups or online communities where you can share your experiences and connect with others who understand what you’re going through. Both here with Hypermobile Solutions and other online forums and groups are great for asking questions, but also just reading about others experiences can validate your own experiences making you feel less alone in your struggles.
Patient Story
One of our members, Emily, often faced dismissive comments about her health. Despite experiencing severe joint pain and chronic fatigue, she was frequently told, “You look fine.” Emily decided to educate her close circle about her condition, sharing articles and personal insights. Over time, her friends and family became more understanding and supportive, which significantly improved her emotional well-being. Emily’s story highlights the importance of education and advocacy in coping with invisible illnesses.
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 comments like “You look fine” 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
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.