I am a member of quite a number of Facebook support groups for my illnesses, particularly ME and POTS. One of the biggest themes I hear from others is a struggle to be heard, understood, believed. I don’t often have
New wheels! I’m so excited to have gotten my first wheelchair! It took a lot of research, and I’m having a really mixed experience with it. Delight! Hope! Frustration! Sometime in the fall, I started having periodic fantasies of going
I spend about 90-95% of my time in bed. I’m able to get up to use the bathroom, grab something from the kitchen, get a book from the living room, but I don’t move around much more than that. And
Here’s the thing about having a really disabling chronic illness. It’s unpredictable. And very difficult to plan for the future. While I have several conditions, the one with the most dramatic impact on my life is ME/CFS. I could improve.
We are not shown many examples of disability in the media, and the ones that we are shown are often portrayed as tragic, or in the realm of inspiration porn. People seem to have an idea of disability as being
The Trump administration wants to use Facebook and other social media to help identify people who are receiving Social Security disability benefits without being truly disabled. Source: On Disability and on Facebook? Uncle Sam Wants to Watch What You Post
Not everyone with a chronic or lifelong illness is going to ‘get well soon.’ One woman explains what to say and how to be there for someone living with a chronic illness that might not get better. Source: What to
Several women published books about women and healthcare this year, and I eagerly read “Doing Harm” by Maya Dusenbery when it came out this spring. I had almost forgotten about “Sick” by Porochista Khakpour until a friend posted a