Tag Archives: cancer

Medical Pinkwashing and the Gender Binary

Content advisory: this post discusses experiences and examples of medical spaces being uncomfortable/unsafe for people who identify as transgender, genderqueer, nonbinary, or another related identity.


I made this a blog post after publishing it on my personal facebook page and several people commented that they had no idea these experiences existed. I realized it should reach a wider audience. I’ve posted it below without editing except to emphasize certain words and I’ve also added some links for further education.


I’m pretty sure you are aware of the pinkified, radically femme and feminized culture of breast health issues, breast cancer, and the typically-broadcast stereotype that only cisgender women experience them.

I’m pretty sure you all are also aware that all genders and body types can have breast medical issues despite the above-mentioned stereotype.

But I think many people aren’t aware of what it can feel like to be in a medical space intentionally geared towards women’s breast care if you are a nonbinary, genderqueer, or transgender (and other identities) person. Or a cisgender man.

Continue reading Medical Pinkwashing and the Gender Binary

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Chronic Doesn’t Go Away

Chronic does not mean predictable. Chronic does not mean temporary. It also doesn’t mean consistent, monotonous, predictably repetitive, or habitual. It’s not banal or soporific. Except that it is.

It can be seen, yet it is invisible. It’s tedious, at the same time that it’s not. It’s not a routine, at the same time that it is. Everything changes, at the same time that nothing really changes.

Which is why we have such trouble understanding it.

Like the Greek word agápe, with no direct English translation, chronic disease – chronos – does not translate into something we can make sense of at first either. The idea that anything will last until we die is far-fetched (except for happy marriages and twinkies).

‘Chronic’ doesn’t fit our understanding of how health and sickness works. We’ve been conditioned to believe that our illnesses are curable; if we just try enough treatments we’ll get better. Injectables, swallowables, stitchables, chemicals, radiation(ables) can fix anything.

Except that they can’t.

Chronic disease is like a parasite; surviving off its host, always adapting to resist being eradicated. The intense throbbing of an anxious and overburdened body is an unwelcome, yet familiar, intrusion with the dawning of each new day.

Chronic disease is unpredictable and that unpredictability makes it nearly impossible to control. The drugs may not be permanent but some side effects are, and the progressive nature of the disease introduces new symptoms when least expected – symptoms that will be forever crashing workdays, nap times, parties, and vacations.

Imagine every injury or mystery pain is there to stay. No longer are muscle strains and sprains healed with heat/ice and stretching; the pain never goes away. No longer are a stuffy nose and sore throat symptoms of a common cold; they are now permanent. No longer is an all-over, throbbing ache a warning sign of the flu; it is reality 24/7/365.

We who have these forever conditions don’t get used to them. There is a degree of accepting them, and though we adapt to these changes in our bodies with no other choice, we still remember what we used to be capable of. Even if we’d prefer not think about our losses, our medical charts track them for us. We can hope for remission, but anyone who knows anything about cancer understands that remission is a sleeping dragon.

Chronic is the wicked word, not disease. Because chronic is the reason our diseases stay.

Chronic doesn’t go away.

 


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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

There Are Worse Things Than Cancer

This will anger a lot of you.

It angers me, too. Likely because we don’t think about what we don’t already think about – that is, what we already know to be true. We’re good as humans at remaining steadfast in our knowledge of, well, what we already know. If you believe something to be true and then you are exposed to new information that may invalidate or challenge what you know, you can be thrown off your rocker.  Ignorance is bliss, but in no way is it a ticket out of learning and having your eyes opened. Sometimes growth – learning – hurts. A lot. And makes you angry.

That being said, are you ready to get angry? Ready or not… Continue reading There Are Worse Things Than Cancer

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

Remembering Rachael, Raising Ruth

Rachael died the day before her daughter was due to be born.

But baby Ruth was already over four months old when Rachael died. She was born so early she weighed less than a pound – 0.95 pounds, to be exact. That’s less than the weight of a four-stick package of butter.

Our physical bodies are on loan to us.  They will die. It is our spirit bodies that are unique and will never die.  It is our spirit bodies that fall in love; our physical bodies only transmit it through touch. It is what we leave behind of our spirit bodies, our love, that becomes our legacy. Continue reading Remembering Rachael, Raising Ruth

When you see me I’m acting

When you see me in public I’m putting on a show. Curtains and…action. Seriously. All the world’s a stage.

Especially when you’re sick. And I mean sick.

Whether you have cancer, ankylosing spondylitis (AS), multiple sclerosis (MS), lyme disease, amyotrophic lateral sclerosis (ALS), fibromyalgia, gastroparesis, vitiligo, rheumatoid arthritis (RA), depression, anxiety, post-traumatic stress syndrome (PTSD), etc etc etc, or a mix of more than one extreme disease, you’ll probably relate to the desire for “normalcy” in this post.

Continue reading When you see me I’m acting