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15 Things Ehlers-Danlos Syndrome Warriors Have Learned to Love About Their Illness

If you haven’t heard of Ehlers-Danlos syndrome (EDS) — you are not alone. EDS is a rare, incurable connective tissue disorder that attacks many systems of the body that is caused by a defect in collagen. With so many negatives associated with being diagnosed with Ehlers Danlos Syndrome including: chronic pain, chronic fatigue, joint dislocations, cluster headaches, bruising, bladder and gastrointestinal pain, low blood pressure and photo-sensitivity … I am going to share some positives other patients and I have learnt to love whilst living with EDS.

My Thoughts

1. I can do my own dress zipper up and down, which is super handy for getting ready.

2. I can use my hand as a comfortable face rest anywhere I go.

3. Ehlers Danlos syndrome has taught me not to judge other people on face value.

4. I can sleep in any position, pretty much anywhere.

5. I don’t need to buy Halloween face paint — the bags under my eyes are big and dark enough.

6. There’s never an itchy spot on my body I can’t reach.

7. I can type incredibly fast — which is helpful in meeting deadlines.

8. People who care about you will stay in your life and the rotten eggs won’t.

9. I have gotten back into some hobbies that have helped give me a purpose, such as art and blogging.

Other Patients’ Thoughts

10. “It makes me more understanding when others are struggling, and I can empathize.” — Robyn Frances Tipple-Smith.

11. “I love that I can educate people and make new friends with Ehlers-Danlos syndrome, known as ‘Zebras.’” — Abby Cappleman.

12. “It forces me to slow down and focus on what is really important. I get to spend more time with my kids than if I was busy all the time.” — Carol Youree Rothage

13. “I love that I look younger due to stretchy skin.” — Fiona Willis

14. “It makes me a great dancer.” — Justine Hills

15. “My skin is super soft, no moisturizer needed.” — Ashley Baliou.

Do you struggle with EDS and have learned to love something about your condition since you were diagnosed? If so, I would love to hear about it in the comments below.

Follow this journey on the Brains & Bodies blog.

This story originally appeared on the blog Brains & Bodies.

Photo by Mari Lezhava via Unsplash.