Category Archives: sickness

The Doctor Who Renewed My Hope In Doctors

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

A Marriage of Sickness and Health

Dear future partner,

We haven’t met yet, or maybe we have and time wasn’t ready.
We need to talk. Now. Before I fall in love with you, before you fall in love with me.

Because I don’t want my disease to cause you to leave me.

Too often I see sad posts in online support communities for severe disease groups. Like this one:

“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”

These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.

Continue reading A Marriage of Sickness and Health

My Struggle With Three Simple Words

How are you?

Just three words.

Just three words silence my voice but incubate my thoughts.

The responses I want to give get caught in my throat as I open my mouth to speak; I gag wordlessly without any outward signs of panic; I feel a glass wall erect itself to support and contain my stoicism while I suffocate.

The words I want to use expand in my chest like air being pushed into an empty balloon, threatening to leak out of my mouth in a jumble of hot air and exhaustion.

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Usually I manage to push aside the wordlump in my throat so I can still breathe and respond in a socially acceptable way. I say polite things, or I say I’m not ok and try to change the subject.

Or I stand there awkwardly, ashamed and lime-lighted, drowning in my reality until I realize someone is waiting for my next move. Continue reading My Struggle With Three Simple Words

Why Sick People Neglect Their Healthcare

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