Growing Up with Ehlers-Danlos Syndrome: 23 Signs and Shared Experiences

Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders characterized by joint hypermobility, skin that is easily bruised and hyper-elastic, and a variety of other symptoms. Living with EDS shapes one’s childhood and adolescence in unique ways. In this exploration, we delve into 23 signs that you grew up with Ehlers-Danlos Syndrome, creating a shared narrative for those who have navigated the challenges and triumphs associated with this condition.

1. Early Recognition of Joint Hypermobility

Discovering that your joints exhibited an unusual range of motion became a defining characteristic of growing up with EDS. While friends may not understand your flexible limbs, you quickly learned that this hypermobility was more than just a party trick.

2. The “Zebra” Becomes Your Symbol

As you delved into the medical world, you embraced the zebra as your symbol. EDS is often referred to as a “zebra” diagnosis due to the medical adage, “When you hear hoofbeats, think of horses, not zebras.” You learned that being unique and standing out was a badge of honor.

3. Frequent Dislocations and Subluxations

Growing up with EDS meant that dislocated joints and subluxations were a common occurrence. Whether it was a shoulder, knee, or hip, you became adept at recognizing the signs and managing these events.

4. The Never-ending Search for Comfortable Shoes

The quest for comfortable shoes became a constant struggle. Your growing collection of arch supports, orthopedic inserts, and special footwear reflected the ongoing battle between fashion and practicality.

5. Navigating the World of Braces and Splints

Braces and splints weren’t just for athletes; they became essential tools in your daily life. From wrist braces to knee supports, you mastered the art of incorporating these aids into your routine.

6. The Vocabulary of Chronic Pain

Describing your pain became an intricate dance of metaphors, analogies, and pain scales. Friends may not have understood, but you became a wordsmith of your own suffering.

7. Frequent and Unpredictable Fatigue

Growing up with EDS meant dealing with chronic fatigue that often struck at the most inconvenient times. Explaining your need for rest to friends became a recurring theme.

8. The Art of Explaining “Invisible” Illness

Conveying the impact of EDS, an invisible illness, to friends and teachers was an ongoing challenge. You honed your communication skills, striving to make others understand the complexities of your condition.

9. The Unique Skill of Popping Joints for Amusement

The ability to pop joints on command became a curious party trick. While friends were amused, you recognized that this wasn’t just about entertainment—it was a manifestation of your EDS.

10. The Unforgettable Experience of Physical Therapy

Physical therapy wasn’t a temporary fix; it became a way of life. Growing up with EDS meant countless sessions with therapists who understood the intricacies of your condition.

11. Sleepless Nights Due to Joint Pain

The familiar companionship of joint pain often robbed you of sleep. Growing up with EDS meant developing resilience in the face of nightly discomfort.

12. Constant Monitoring for Skin Fragility

Cuts, bruises, and fragile skin became part of your daily routine. You became adept at monitoring and caring for your delicate skin, aware that healing might take longer than expected.

13. The Emotional Impact of Medical Skepticism

Growing up with EDS meant encountering skepticism from those who couldn’t comprehend the invisible nature of your condition. This emotional toll shaped your perspective on healthcare and advocacy.

14. The Struggle of Explaining “Good Days” and “Bad Days”

Your life was defined by the ebb and flow of symptoms. Explaining the concept of “good days” and “bad days” to friends became a constant struggle.

15. The Lifelong Relationship with Compression Garments

Compression garments weren’t just a passing trend; they became integral to managing symptoms. Growing up with EDS meant learning the nuances of when and how to use these supportive garments.

16. Developing Coping Mechanisms for Brain Fog

Brain fog became an unwelcome companion. Growing up with EDS meant developing coping mechanisms to navigate mental fogginess and cognitive challenges.

17. The Need for Adaptations in Physical Education

PE class presented unique challenges. Growing up with EDS meant working with teachers to adapt physical activities to accommodate your condition, fostering resilience and determination.

18. The Impact on Academic Achievements

Balancing academic pursuits with the challenges of EDS required resilience and adaptability. Growing up, you learned to prioritize self-care while pursuing educational goals.

19. Advocacy for Your Health Needs

Growing up with EDS transformed you into a natural advocate. From educating teachers about your condition to asserting your needs in medical settings, you became an expert in self-advocacy.

20. The Unpredictability of Weather Sensitivity

Weather changes weren’t just small talk; they became potential triggers for symptom flare-ups. Growing up with EDS meant navigating the unpredictability of weather sensitivity.

21. The Rollercoaster of Medication Trials

Your journey involved various medications to manage symptoms. Growing up with EDS meant enduring the rollercoaster of medication trials, understanding that finding the right balance was a process.

22. The Impact on Relationships and Friendships

Growing up with EDS influenced your relationships. Some friends struggled to comprehend the challenges, while others became pillars of support. EDS became a litmus test for genuine connections.

23. Embracing Resilience and Finding Community

In the midst of challenges, you cultivated resilience. Growing up with EDS meant finding solace and strength within a community of individuals who shared similar experiences, creating a support system that celebrated triumphs and navigated setbacks together.

Conclusion: A Shared Journey of Strength and Resilience

Growing up with Ehlers-Danlos Syndrome is a unique journey filled with challenges and triumphs. Each sign represents a shared experience, a testament to the strength and resilience cultivated in the face of a complex and often misunderstood condition. As the journey continues, those who grew up with EDS find solidarity in their shared narrative, creating a tapestry of understanding, empathy, and empowerment.