Lewis Temple's story with Ehlers Danlos Syndrome

The Spoonie Struggle

Content provided by Jessica Temple. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Jessica Temple or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.

3y ago 35:57

MP3•Episode home

Fetch error

Hmmm there seems to be a problem fetching this series right now. Last successful fetch was on December 30, 2022 08:52 (1+ y ago)

What now? This series will be checked again in the next day. If you believe it should be working, please verify the publisher's feed link below is valid and includes actual episode links. You can contact support to request the feed be immediately fetched.

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

Website Facebook Instagram Email Twitter

Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Hosted by: Jessica Temple

Music by Antarcticbreeze Music

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment.

50 episodes