Posts Tagged ‘Managing Ehlers-Danlos’
Posted on August 23, 2023
Living with a rare disease like hEDS (Hypermobile Ehlers-Danlos Syndrome) can lead to misunderstandings and sometimes offensive comments from people who don’t get it. However, handling these remarks with wit and wisdom can make the situation easier and lighten the load. Here are ten clever comebacks for handling offensive comments about hEDS: “You’re just lazy.” […]
Posted on August 22, 2023
It is challenging to find the source of our gut problems, so many of us have related to hypermobility. The volunteer media team at Chronic Pain Partners tried to tackle the basics so our readers could have a brief introduction to the variances and testing available for different diagnoses of these often ‘gut-wrenching’ illnesses. Note: We […]
Posted on August 21, 2023
When it comes to health crises, only a few diagnoses can be as daunting as Ehlers-Danlos syndrome (EDS). But you know what they say, “When life gives you lemons, make lemonade” – or, in this case, when life gives you chronic pain and mobility issues, make jokes (if you can)! Before we dive into the […]
Posted on August 20, 2023
[Content warning: trauma, PTSD, mental healthcare, negative clinician behavior, difficult medical encounters] Have you ever read something that left you speechless? I have so many thoughts and feelings about this article – ones that I can’t express with any sort of coherence at the time. What I can say: clinicians READ THIS (finger pointing down […]
Posted on June 24, 2023
[CW: Suicide] Netflix has just released the highly anticipated documentary, “Take Care of Maya,” which unveils the heart-wrenching journey of the Kowalski family as they confront and challenge wrongful child abuse allegations. Directed by Henry Roosevelt, also known for his role in “The Social Network,” the documentary delves deep into the lives of the Kowalskis, […]
Posted on June 22, 2023
Many of us can often feel like we are ‘professional patients’ managing our care as a seemingly never-ending full-time job of its own. But for a moment, try picturing yourself as a first-year medical student. What tactics can you imagine you might need to learn to keep the volumes of scientific and medical data organized […]
Posted on June 22, 2023
In May, we published an article about a new children’s book about EDS, invisible illness, and disability–Bendy Bones and Stretchy Skin: An EDS Story. In this book, a young girl named Abigail struggles with her Ehlers-Danlos Syndrome and the effect it has on her life. Some of Abigail’s friends and classmates don’t understand why she […]
Posted on June 15, 2023
“You have arrived at your destination,” our car’s navigation system announces. Crossing the street, I lean on my partner’s shoulder. An involuntary shudder ripples through me as I succumb to a wave of assaulting nausea followed by a sharp pain in my abdomen. I stare questioningly at the letters “gency” flickering on the neon sign […]
Loading ...
