Fighting Insurance for Care

As if living with an invisible disability weren’t exhausting enough, many of us have to fight our insurance companies to get the treatment we need. Because hardly anyone can afford treatments at today’s prices, our insurance companies often make the decisions about what care we receive. That decision should never be made by an insurance company, but that is today’s reality.


Living Our Hopes, Not Our Fears

Trending online and around town this week:  quotes about living for your hopes and dreams, not your fears.  Quotes have been attributed to Brené Brown, Nelson Mandela, and many others.

This is an important idea for people in this audience. We have limitations other can’t see, and must constantly explain ourselves. How often do you begin sentences with the words, "I can't..."?  This can lead to a mindset in which we limit ourselves even more than our conditions do.


The Long Day: How We Cope

I wanted to title this “The Long-Ass Day,” but thought Psych Central’s editors might not appreciate that. And it’s not as if it would be a likely search term. I happen to be facing an unusually challenging day tomorrow and thought this is probably a thing for a lot of us—going into a day that will require many more “spoons” than we are usually issued in the morning. (If you’re not up on spoon theory, check out this great article


The Diagnostic Treadmill

What’s trending this week? Stories from my friends with rare, mysterious, and/or autoimmune conditions and their frustrating journeys to diagnosis. Most notably, my friend, artist Heather Thompson, has had a big shakeup with a new doctor completely revising her treatment strategy.

Heather posted a link to a great article, “Stop Saying at Least it’s Not Cancer,” and wrote a preamble to her post about how easy it is to rally around people with cancer because others can wrap their heads around it. It has an endgame—permanent remission, while conditions like hers do not. Hers and others like it are perplexing and inconsistent, and there’s no endgame, just repeated attempts to control a body that refuses to function normally. It’s much harder to get, and stay, behind people with complex or hard-to-diagnose illnesses.


Interdependence and the Illusion of Self-Reliance

Social media is a rich source for subject material lately. The latest meme craze is about interdependency. I’ve seen memes about how American rugged individualism and the pressure to be independent is about making you buy more stuff. I’ve seen ones that say it’s an excuse not to help others. I’ve seen ones about why societies formed, so we could pool our resources and help one another. They all agree that success lies in having a network.

This is especially relevant to people with invisible disabilities. Asking for help is hard, but because we look fine, no one knows we need it so it’s seldom offered. We like to show how independent we are, but we need help from others—we can’t do it all on our own.


Trigger Warnings: I Get it Now

First of all, if you’re a fan of the medical drama New Amsterdam and haven’t yet seen the season finale, here’s a spoiler alert. Same if you’re not current on Grey’s Anatomy. Read on at your own risk.

I’ve always rolled my eyes at trigger warnings, thinking that people who have been through things like sexual assault can’t be protected from the knowledge that it exists in the world—that ship has sailed. I know a lot of people think that way, but I also know that a lot of people in my audience suffer from debilitating PTSD (post-traumatic stress disorder). I’m here to say, I get it now.


Smoke and Mirrors: My Vacation on Social Media

I posted 3 weeks ago about the proposed surveillance of social media by the Social Security Administration.   This may be preaching to the choir, but I took a bike trip last weekend and my experience highlighted the problem with this idea.

It was too soon after a major pain episode for me to take a bike overnight, but I had just sold my condo at a profit after years with an underwater mortgage, and I wanted...


Toxic Positivity: It’s a Thing

Every once in a while, the popular culture calls BS on a phenomenon in a refreshing backlash. I’ve been hearing “toxic positivity” mentioned a lot lately, and I love it!

I remember the positive-thinking bandwagon as a product of the 1970s—possibly as an offshoot of the hippie movement, but it’s probably always been around. I just got old enough to observe it during that time. It really took off during the early days of the internet, when The Celestine Prophecy was a bestseller and the self-help book section at Border’s expanded into the surrounding aisles.


Disability Fraud: Why the Hysteria?

Last week I commented on an article in the New York Times that reported on the Trump administration’s proposal to monitor the social media accounts of people who collect Social Security Disability Income.

This week’s post is inspired by commenter Trap Rivers, whose eloquent comment to that post included the words, “we are the villains who are in the crosshairs of the angry mob.”  Trap’s comment got me thinking about the many ways society demonizes its most vulnerable people, from the urban-legendary “Welfare Queen” to people with disabilities—especially ones you can’t see.


Social Media Surveillance for Disability Fraud

The New York Times ran an article on March 10 that’s been getting a lot of attention on Facebook. I just saw it yesterday or I’d have written this sooner.

The article reported that some members of Congress support a plan in which the Facebook accounts of Social Security Disability Income recipients are monitored for photos showing them engaged in activities that they allegedly should not be able to do if they are indeed disabled. For me, that would mean my bike trip photos would be used against me. That is, if I qualified for SSDI, and that’s another matter altogether