Tag Archives: BeingCharis

The Affordable Care Act is Not Affordable for Me

My previous post, The Work of Being a Professional Patient, needed a second chapter. There’s more to that broken system than simply being an unpaid professional patient.  In addition to the phone calls, meetings, emails – the legwork of managing our healthcare as chronic disease patients – there’s a lot of money involved, and a lot of it flows out of the pockets of people who can’t afford the care they need.

The system is broken.

It is a system designed for healthy people to get catastrophically sick and go from there. A system that punishes people for being sick but provides no support to keep them from getting sick.  Only $251 is spent per capita on public health measures aimed at proactively preventing illness.  The American healthcare system pads the wallets of health insurance and big pharma companies and often doctors and nurses too, then forces patients to do their work for them. America, land of the sick, home of the outsourced labor in our own back yards: people paying corporations a big chunk of their income for the privilege of managing their own healthcare. Privilege is a dangerous word. I’m privileged to be chronically ill and I pay over 10% of my monthly budget on my healthcare premium alone, after the assistance of the federal subsidy intended to keep my rates within my income limits. This does not include my out of pocket expenses on doctor visit copays, prescription copays, over the counter NSAIDs, heating pads, and various treatments to manage side effects of either medication or illness. Continue reading The Affordable Care Act is Not Affordable for Me

I’m Afraid of Black Men

I’m afraid of black men. Now that I have your attention, let’s talk about domestic violence. Really, this has nothing to do with black men. Except it does, for me.

I have post-traumatic stress disorder (PTSD), which is triggered when I see a black man on the sidewalk or riding a bike.  This is because I have experienced domestic abuse at the hands of a former boyfriend who happens to be black. I hate this.  I absolutely hate that black men are the trigger.  Why?  Because I love black men. I love everyone. I am terrified that my fear, which has nothing at all to do with black men, might show itself and make a lovely black man think that I, a white woman, hate him. Just because black men trigger a physiological response from memories being pinned to a bed, against a wall, and restrained in a bathroom by my former black boyfriend does not mean I hate black men. It just means that seeing a black man in a public space causes a fight or flight response in me: several moments of intense fear manifested by heavy breathing, a rapid heartbeat, and blurred mental acuity.  The times that these triggers have actually been accurate – when the black man on the sidewalk has been my ex – my panic actually lasts for many hours while my brain replays the encounter along with memories of the abuse, leaving my body tense and my brain a mess. Continue reading I’m Afraid of Black Men

Patient Advocacy & Courage; Becoming a Voice For Many

Do you know how much courage it takes to tell 200 strangers it hurts to have sex?  Courage.

Continue reading Patient Advocacy & Courage; Becoming a Voice For Many

I Said “Yes” to Big Pharma

I didn’t want to start this blog.  I knew it would get me in trouble.  The kind of trouble that puts me in front of a crowd of 200 people from around the world to talk about what it’s like to live with Ankylosing Spondylitis.  I’m in trouble. Big time.

I didn’t want to dive into something bigger than I could handle – something that had the potential to amplify my voice into something like…well, like this conference I’m going to in San Francisco the first weekend in November. I’ve really done it now.

Continue reading I Said “Yes” to Big Pharma