Tag Archives: ptsd

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, disability, Mental Illness, open letter, Patient Advocacy, PTSD, SSDI

To the Social Security Administration About Denying My Claim for Disability Benefits

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When I first wrote about applying for disability, I mentioned a standard practice of the Social Security Administration: default semi-automatic denials of disability claims. On average, it takes 3-5 years for someone who is disabled to be awarded benefits. This routine dragging out of claims affects me and many others financially and emotionally and also feels immoral and unjust. The disability process has been intentionally crafted to be as difficult as possible to navigate and even survive, yet this program was founded for the purpose of helping people live better lives.

The following letter is my formal response to a denial of my first claim. To be clear, many claims are denied twice before moving to a hearing with a judge. I am sharing this publicly because I want to expose the vulnerability so many go through as they seek disability – as they seek resources so they might live longer, healthier, fuller lives in the face of significant barriers to a substantial work-life.

Before I share my letter, here are some reasons I was told I am not disabled under the rules of the Social Security Administration:

Continue reading To the Social Security Administration About Denying My Claim for Disability Benefits →

#sickbody, Advocacy, Charis, Invisible disease, Mental Illness, Patient Advocacy, PTSD, sickness

I’m Mentally Ill

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On April 14, 2015, I was reeling after a week of severe psychological episodes that included a trip to the Emergency Room. I was referred to a group day program that I walked out of because it was not what I needed. An awkward visit to a very clinical psychiatrist began my medication journey – I walked out of Rite Aid with two new prescriptions and new additions to my medical chart. I could no longer take care of myself  without medication to help treat severe trauma and depression triggered by recent events. I had officially become mentally ill.  I walked home shaking my pill bottles like maracas and finally felt there was help for me, then wrote these thoughts:

I know what it’s like to call out and have no one truly hear me
For the pain flooding my brain
I know the brokenness of a body grieving
The flashbacks of a mind recalling trauma
I also know what it’s like to finally be heard
And the help that comes
Sometimes too late
And never too soon
And the final, often fleeting, feeling of safety

One year later I am finally with a psychiatrist I trust, who provides what I need: one-on-one counseling in addition to superb medication management.

I have Severe Major Depressive Disorder and Post Traumatic Stress Disorder. I do not bow to stigma and I am not ashamed. There is no doubt in my mind that I need medication to help me process trauma and grief on a level playing field with my brain. I am not suicidal and never have been, but one doesn’t need to be suicidal to get help.

I owe a lot to my loved ones and friends who have been with me during the last, very rough, year and a half that began this journey to my diagnoses. Especially to those who have been a physical presence; who have made appointments for me and kept me fed, showered, held, and loved. There are many more from afar who have checked in daily and made sure I’m still going. They all deserve every thanks I can give and more.

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I am on a lifelong journey towards being mentally whole again, knowing what I’m battling, and having help.

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, disability, Gender, Healthcare, Invisible disease, Patient Advocacy, Relationships, Role Models, sickness, spondyloarthritis

The Doctor Who Renewed My Hope In Doctors

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It wasn’t always this way. I used to trust that doctors could, and would, cure me. They knew all the right answers, whether I needed medication, and which medications would fix me. Going to a medical establishment carried the promise of making me feel better within hours or days.

That was before I became ill with a chronic disease, Ankylosing Spondylitis. That was before I was diagnosed with Major Depressive Disorder, Anxiety, and PTSD.

Many believe, like I used to, that visiting a doctor means getting better. But doctors who treat permanent diseases have a tough job: they stare down diagnoses every day that they can’t eradicate. There’s a huge difference between curing a temporary malady and managing a lifelong disease. And to choose to be a doctor who treats patients with incurable diseases takes special courage – or a desire to make a considerable amount of money.

Doctors leave medical school with heads full of practical clinical terms: elevated T-cell count, HLA-B27 positive, elevated bilirubin, polyenthesopathy, erosion of the spine with bone calcification. But, unless they share our diseases, they do not know what it is like to be in our bodies; to feel our forever pain, our fatigue, our fears. They rely on us to paint a picture of what it actually feels like to have a high T-cell count and polyenthesopathy, but many of them forget to ask, and when they do, sometimes they don’t know why they need to know what the patient is actually feeling. If they’re smart, they try to help us manage our pain, fatigue, and fears by prescribing treatments based on what they see in lab, X-ray, and MRI results, with final decisions based on the symptoms we present. Continue reading The Doctor Who Renewed My Hope In Doctors →

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, health, Healthcare, Invisible disease, Patient Advocacy, sickness, spondyloarthritis

Why Sick People Neglect Their Healthcare

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Have you ever seen the training videos for retail workers about the dangers of repetitive motion injuries? They came to mind the other day after a recent experience switching medications to treat my ankylosing spondylitis.

Managing ankylosing spondylitis – or any chronic disease – is like the momentum of a repetitive motion injury, but worse. Chronic diseases come with a slightly different package. With enough rest and care, a repetitive motion injury can heal and go away, but chronic (read: always there) diseases have no cure.

For example:

To get a new specialty prescription I must call my doctor, health insurance company, drug manufacturing company, and pharmacy multiple times over several days (or weeks) to finally get the medication in hand. Often guesswork determines who to call next because as a patient I don’t know where the process has stalled. It feels a bit ironic for me to be the last to know. I hear things like this on the phone: Continue reading Why Sick People Neglect Their Healthcare →