Category Archives: Charis

#sickbody, ankylosing spondylitis, Black Lives Matter, Charis, chronic disease, chronic pain, Domestic Violence, Love, PTSD, Relationships, Survivor

I’m Afraid of Black Men

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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 →

#sickbody, Advocacy, ankylosing spondylitis, Charis, chronic disease, chronic pain, disability, Patient Advocacy

Patient Advocacy & Courage; Becoming a Voice For Many

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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 →

#sickbody, Advocacy, ankylosing spondylitis, Charis, chronic disease, chronic pain, disability, public speaking

I Said “Yes” to Big Pharma

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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 →

#sickbody, Advocacy, ankylosing spondylitis, Charis, chronic disease, disability, health, Invisible disease, SSDI

To the stranger who told me I’m not disabled

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Most of the time, when people ask for help, they really need it.

Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis
Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis. Left to right: Cyd, Mel, Charis, Denice, Lori

And many of us are scared to ask because we’re afraid we’ll be attacked for it. A good friend recently put a crowdfunding page together in an effort to help me resist homelessness and survive the winter while I seek Social Security Disability Insurance (SSDI). Today, another friend shared the YouCaring link (edit 2/10/16: link no longer live) on her facebook page in support of me.

What happened next shocked me. Someone commented on my friend’s post about the youcaring campaign to help me. And it wasn’t supportive.

It was along the lines of, “When I am hurting I still get up and go to work. Your friend should find a job, she can work.”

I engaged in conversation with this person over several hours and took screenshots of the whole interaction, knowing the person might later delete her comments (which she did).

My effort was to see her side of the story – and in the end it came out that she had lost a child years ago and she was projecting her grief onto me in the form of hatred and judgment.  It was very sad and all I could do was continue repeating that I would be happy to talk with her in person so she could learn more about ankylosing spondylitis.

Those of us struggling to live with our chronic diagnoses are so often put into positions where we are challenged for our disabilities and forced to prove how sick we are. How degrading.
Continue reading To the stranger who told me I’m not disabled →