Living independently with Ehlers-Danlos syndrome is possible. So is living with a partner. Both require some thought and adaptation. Developing and maintaining healthy relationships requires a great deal of work, regardless of physical health. Using a little common sense and vetting your prospects before committing can help you…
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Sometimes I wonder how much of my Ehlers-Danlos syndrome (EDS) is visible to others. Apart from the obvious things, like my bruising, I think much goes unnoticed. This is partly because I have more moderate EDS, so I don’t have as many visible features as those with more severe cases.
Several years ago I learned an important distinction about positivity. For a long time, I had thought that positivity meant ignoring what was upsetting or not going right so that you could “pretend” to be happy. I had always thought that was somewhat ridiculous, because pretending that the negatives don’t…
The past few weeks have been a whirlwind. As part of my job as a college counselor, I’m working with high school seniors to help them make college decisions. As someone who lives and works on a farm, spring is, of course, when chores multiply. May is always exceptionally busy…
I know I write frequently about my massages, but that’s because they are the only treatment available to me, and they keep my pain level under control. This is one reason I find it so frustrating that massage is rarely covered by health insurance. Because my rare disorder doesn’t…
The initial pandemic shutdowns last spring brought my family’s very busy schedule to a grinding halt. We decided to use the time to improve our emotional and physical well-being. We worked on our relationships with one another and inducted a new member into our family. During the spring and summer…
After almost six weeks of being unable to get a massage because my therapist was injured, I finally got back in last week. I really needed it, as I’ve been dealing with a pain flare from getting stuck in the mud at the farm where I live. Most of…
I haven’t been sleeping restfully this week. I’ve been doing that whole wake-up-and-roll-back-over thing seemingly a dozen times a night. I’ve been dealing with a pain flare since I got stuck in some thick, deep mud in a pasture at the farm where I live and nearly pulled my…
Last week, I went to the dentist for the first time since the beginning of the pandemic. I had my regular cleaning just before everything shut down last year, and then dentists were either closed or working at reduced capacity for months. After my fall appointment was canceled, I joined…
Throughout the past week, the weather has been gorgeous. After weeks of seemingly endless rain, terrible mud that’s taken a real toll on me physically, and generally depressing weather, it’s been a true mood-lifter to see the sun and milder temperatures. I love many things about winter, such as soups…
Recent Posts
- Breathing issues hamper daily activities, quality of life in hEDS October 2, 2026
- Feed for thought: Learning another hard lesson about my EDS body September 29, 2026
- Study spotlights gaps in provider training for hEDS vulvar pain care September 25, 2026
- Choking and drooling: Embarrassing EDS symptoms we don’t talk about September 22, 2026
- Shoulder surgery helps ease pain when 2 disorders overlap, study finds September 18, 2026
- Overdoing it has landed me in a world of hurt with painful EDS symptoms September 15, 2026
- Eating disorder screen may overestimate risk in hEDS, HSD September 11, 2026
- The long quest to learn the reasons for my strange symptoms and illnesses September 8, 2026
- Androgen hormones may affect hypermobile EDS symptoms in women August 28, 2026
- Guest Voice: Changing my treatment plan resolved years of EDS symptoms August 27, 2026