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An Open Letter in Defense of Compassion for Patients

Dear Keepers of the Future for those of us who are sick and disabled,

It’s ok, you can roll your eyes at the open-letter format. But this is important. Real, future-ensuring important.

The president just set a state of emergency for the opioid crisis. Republicans are looking for more ways to derail the Affordable Care Act. Insurance companies can still play God. There’s plenty of ways for employers to get rid of you because you’re sick. Somehow, I’ve fallen on the short side of all of these and it’s high time people took notice.

Praying for compassion for patients affected by the opioid crisis

I’m sick (I mean, I have a disease that can’t be cured). I’m disabled (when my disease is flaring). My condition is rare and progressive. And most of the time, you would never know. It’s been a gift to see both sides of the coin when it comes to what affects those that the world forgets.

Each time a Republican votes to repeal the Affordable Care Act, I hold my breath. I’m lucky – my skills are currently in demand, but it doesn’t mean I’m completely safe. They rally around their desire to pay only for their own needs – having to support the sick and vulnerable is a punishment to them. But the government hasn’t stopped there.

Yesterday, Donald J. Trump, unlikely president, said he would declare a state of emergency.

The demonization of opioids and the opioid crisis that currently grips this country is terrifying for someone like me. It’s scarier than the potential risk of losing my healthcare. It’s scarier than the risk of losing my job for being sick (I survived that once). This state of emergency has the potential to take a devastating toll on my treatment options.

I’m not downplaying the price many have paid when doctors have been loose with their prescription pads. Nor am I saying that we don’t need better regulations. I’m saying that we can’t forget the people who rely on those medications to survive.

I asked my doctor to take me off of oxycodone because it was so hard to fill. Laws and regulations have made it so that many pharmacies don’t keep much in stock. Each month, I went to 4-5 different pharmacies to try to fill a medication that was necessary to making it through each day.

And I’m one of the lucky ones. I don’t live in Indiana where they have made narcotics nearly impossible to get unless you have cancer. My doctor only requires drug tests every 6 months.

This attitude – that opioids are horrible – has even trickled down to the support groups that I belong to. People are dismissed or insulted if they take narcotics. Like it is a badge of honor to refuse them. It’s not hard to believe that narrative when the media only tells one side of the story.

How someone with pain lives through the opioid crisis

The opioid crisis & the constant battle to repeal Obamacare are evidence of a lack of empathy from the top.

It’s not much different from the boss who couldn’t wrap his head around me being sick and what that truly meant. My boss put me in a box as an “other” who didn’t deserve to be there. When my insurance denied a potentially life-changing surgery for being experimental, they had a determination without looking at the patient.

It’s happening every day in our government. Each vote to go back to the way things were before the ACA is ignoring the “others”. Every media report that forgets to include stories or information about the legitimate uses of narcotics puts those of us who need them on the defensive.

When you forget to think outside yourself or outside the norm, people suffer.

So, I’m asking you to remember those of us on the other side of the stories. Pause and connect with people who will be burdened by the state of emergency surrounding the opioid crisis. Look outside of yourself for other perspectives.

Thank you,
One Exhausted Citizen/ Rare Disease Patient

 

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