Lewis Temple's story with Ehlers Danlos Syndrome

The Spoonie Struggle

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Episode 3: Lewis Temple's story with Ehlers Danlos Syndrome

In this episode, guest Lewis Temple shares his story of living life with Ehlers Danlos Syndrome (EDS). He also has POTS, craniocervical and atlantoaxial instability, migraines, dislocations, trigger finger, and TMJ. It took him years to finally get a proper diagnosis. He start getting formal diagnoses at age 23. He received several misdiagnoses along the way. Lewis found that although some doctors listened to him, others didn’t, some looked only for the easiest answers, and some prescribed harmful treatments. Challenges include brain fog, chronic pain, finding doctors who will listen, and trying to work. To advocate for himself, he is careful about his wording in appointments with doctors. His life is impacted by not being able to look up or down, and having to take life slower. To cope, he realizes that pain can be changing and fleeting, creates his own meaning in life, plays video games, learns new things, and reads. He shares his fears about the future and his goals for the future. He recommends advocating for yourself by being mindful about how you communicate with your doctor.

Links: The Spoonie Struggle Symptom Tracking Journal Hardback The Spoonie Struggle Symptom Tracking Journal Paperback The Ehlers Danlos Society

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