I wrote this in 2017, but didnt publish it, because I could see no real solution.

Little has changed, but at least I get mild pain pills now.

Had I died during my cancer treatments, the coroner’s report wouldn’t say I died of an overdose of cancer drugs, or that my body couldn’t take the treatment, or that I had a heart attack during recovery because I didn’t rest enough.

It would say I died from cancer because without those things, the others would not have taken place.

Sorry to be so morbid. But I’m having an actual crisis: not being able to get my medicine from my original doctor because I changed my insurance and then moved, and not being able to find a new doctor who will prescribe anything close to it.

And I have the CDC’s bullshit reaction to the opioid crisis to blame. A small though important flame fanned to inferno by the media and politics.

Prince died of chronic pain.

Michael Jackson died of chronic pain.

Countless other people are dying of pain, both mental and physical. Treatable pain sometimes.

But it’s being turned into a story that it’s simply drug overdoses that are killing people.

Not only is this lie making the opioid overdone issue into an actual crisis, it’s also making it worse for those who legitimately need the medicine to live semi-normal lives.

How do we stop this? What can we do? Most of us are barely hanging on, which is probably why we are targets.

Telling our stories is key.

What’s happening now is that there is an increasing level of deaths due to overdoses from prescription pain medication. This is a real problem, but one whose scale has been blown way out of proportion.

What happens when a serious but manageable problem is treated like a widescale Defcon1 emergency?

You get proposed solutions that are way stronger than they need to be.

You don’t treat the common cold with cancer drugs. It’s overkill that doesn’t work. and that’s what they’re doing with the opioid crisis.

The perception is that there are a lot of people who are in pain are taking too much medicine, or being prescribed too much medicine, then hoarding them and selling the balance to unscrupulous people, who are then reselling them and making a profit from addicts.

These addicts are portrayed as a criminal element that must be stopped at any cost.

Three problems – addicts any other place on earth are seen as patients, treated, and managed instead of being fed into the for-profit prison-industrial complex.

Second, the majority of the time, this is Not how addicts or drug dealers are getting these drugs.

Third, those of us in chronic pain are the cost. We, the majority of law-abiding citizens, whose conditions aren’t seen as priorities, and are thus treated with pain medicines instead of cures, are suffering because of the minority of people who buy or sell stolen drugs.

As a result we’re being forced to take less medicine to treat the same issues.

Which doesn’t work, because we’re usually prescribed the minimum effective dose to start with, precisely to prevent dependencies & to keep from building immunity.

The reality is that doctors take a lot of time – sometimes years – of coordination and prep with patients, including ruling out or including all other possible treatments besides opiates and other drugs.

We need our pain medicines to function, like diabetic patients need insulin. Being dependent on an availability of a drug is completely different from being an addict.

And drug addiction is a disease, not an evil. A lot of famous and prominent people that even conservatives don’t consider criminals have had problems with pills.

They need treatment not jail.

Not to mention, theft is how most pain pill problems originate. Not over-prescribing. Doctors aren’t typically monsters.

The first step to that is telling our stories.

We’re invisible.

That’s part of the problem.

Many of us are quiet about our illness because we don’t want to burden others. Or we’re in denial about being permanently ill until it’s too late.

Or we don’t realize how important it is that we share our experiences. I didn’t.

It’s important because if no one is talking about the problem, no one knows there is a problem, and no one does anything about it.

Or if you only start talking about a problem when it becomes a crisis, it’s that much harder to get the majority of people that you need to take note and possibly help spread the word before it’s too late.

Things get worse if it’s discussed abstractly and theoretically at the legislative level, instead of in terms of real people with real and complicated issues.

The amount of noise we’ve made so far is why statements that some of us aren’t even people doesn’t resonate.

Why does this require us to tell our stories?

Because this false narrative seems so accurate on the surface, that the seemingly obvious solution is hurting millions of people and also not saving the thousands of people who still die each year.

As a result of cursory examination of what’s being called the opioid crisis, the CDC issued guidelines that restrict the use of pain medicine.

These guidelines make no distinction between people who depend on pain medicine to normalize their lives, the way diabetes patients depend on insulin.

Some of us are walking around with the equivalent of sprained ankle pain in  many of our joints.

Some of us feel in our bodies every day the way you do when recovering from surgery.

Some of us get migraines so strong, we can barely lift or turn our heads or open our eyes – on a regular basis.

Again, our doctors already give us the minimum required amount of medication, sometimes in the form of opiates, to manage our pain so that we can still be mothers and fathers, workers and business owners, friends and spouses.

However, some doctors and hospitals are taking the CDC guidelines as gospel, changing how much medicine we’re allowed to have. So we’re going from barely managed pain to not having our pain managed at all, for some of us.

In some states, this has extended to making it difficult for normal people to get pain medicine after surgery.

Imagine not being able to get anything stronger than Tylenol after doctors cut into your body.

Now, you might think, as I once did, that perhaps this is an over-zealous version of a necessary evil to save lives.

In your mind the question may lurk: if it saves thousands of lives, could it be worth millions of people being in more pain?

Could we possibly find an alternative for the people in pain than opiates, while also saving the lives of the people overdosing?

There are 3 problems with this.

Restricting the pain meds isn’t preventing the addicts from dying. Deaths are still rising, except in a few extreme cases. Prescriptions are that small a part of the problem.

In fact, we may be creating new addicts via a rise in heroin addiction that is thought to be a direct result of these new guidelines.

The fact that the meds that people are desperate for aren’t able to get through conventional means aren’t available drives them to other illegal sources such as illegal online purchases iftennkaced with fentanyl.

This is what is thought to be fair it sing mist of the deaths.

And yet nothing is being done to stop it. Why is that? Who is profiting or will profit from our pain?

We should also be treating the addiction, rather than jailing addicts – where they often still stay addicts – instead of taking medicine from people who need it.

How does taking medicine from someone who is in pain prevent someone else from overdosing?

The answer is that in the vast majority of cases it doesn’t. In the minority of cases where it seems like it does, the problem didn’t go away. It just shifted to another time or place.

So it doesn’t actually prevent suicides or overdoses, because sadly they would have happened some other way.

The truth is, doctors have spent decades attempting to alleviate our pain, and the best solution covering the most people is prescription of opioids.

The opioids that are killing people are not from doctors over-prescribing, nor from pain patient overdoses. They are from fentanyl overdoses.

Chronic pain patients that have some relief are less likely to be suicidal from the pain, because they aren’t in as much pain. Doctors were already restricting how they prescribe before the CDC guidelines.

Opiates for addicts are often from theft. So why not prevent drugs from being stolen from pharmacies, doctors and patients?

Why not, for example, invent a new kind of prescription bottle that requires a fingerprint or combination lock to open?

Why not mandate that prescription pain medicine be kept under lock and key, provided with the prescription and covered by insurance?

Sure there are some people being prescribed medicine they shouldn’t be taking, and a few unscrupulous doctors have made a side business out of “losing” prescription pads.

But these people are in the minority. And they aren’t hard to spot. If you look at a patient’s medical history and they’re suddenly getting pills but their doctor visits didn’t go up over a one year period? Investigate.

It’s not enough on its own. It could mean a condition flared and they are being treated by a chiropractor who works with a doctor who prescribed medicine in tandem.

But it gives you a starting place. Sometimes it’s a rich person who bought or blackmailed a doctor. Or a person in pain who is also addicted.

And restricting the amount of medicine in supply just makes patients suffer and criminals more desperate.

And restricting medicine to people who need it isn’t catching them. Changing the law in this way rarely stops people who were already doing illegal things. We’ve seen this before with the war on drugs.

So the response to the so-called opioid crisis is not only inhumane. It’s ineffective.

Right now it mostly affects those in chronic pain. But as we’re already seeing, this is only a test. People going to ERs in pain are now being turned away. People who need medicine post-surgery are suffering.

It won’t be long before this expands to other kinds of necessary medicine that technically won’t kill people if it’s taken away.

Who benefits from this? No one.

Including the drug companies who profit off our pain. Perhaps states which have medical marijuana programs.

But what about those that don’t? Medical marijuana is still illegal at the federal level too.

People don’t know this part of the story.

And they don’t know because we, the invisibly ill, are used to hiding.

We hide our disabilities because we see how people with visible disabilities are mistreated.

We hide to protect our family and friends from worrying over us too much.

We hide to protect ourselves from common reactions, to keep our jobs, to protect our reputations from colleagues who will think us less than.

We hide accidentally, because it takes too much out of us to simply live our lives and survive. There’s no energy left over to also document – and mentally relive – the trauma we go through.

Hence, no one knows of our suffering. Hence our cries of unfairness are falling on deaf ears.

We obviously need to organize.

But as I learned during my cancer episode, being sick can be a full time job.

Finding a good doctor who takes my insurance can take up a whole day of calling around and looking at research online. That’s just one doctor.  I need five specialists at the moment.

If you’re lucky enough to have all the right doctors and they work together?

You still have to see them. Let’s say you see one a day, ten minutes from your house, and you’re only there for an hour. An ideal situation that never happens. That’s still an hour and twenty minutes from a regular work day.

You have to go to the pharmacy and pick things up. And if you can’t drive, you need to find a way to get to see all of them.

There’s taking medication, coordinating with food or not food. The paperwork involved. The scheduling. The calling and faxing. Simple things like dressing that used to take five minutes, and now take an hour. Plus the hour you need to rest for the energy expended.

God help you if you must rely on public transportation. Cross off another 10 hours a week, just going back and forth for treatment and meds, and attending appointments.

That’s 8 hours of calling around and research, and 20 hours of travel plus attending appointments. A part time job.

What about the time lost actually being sick?

Or if you have fatigue, and need a half an hour to recover from each half hour of work? Or the fact that it takes you at least twice as long to do regular things as it used to before you got sick (if there was such a time)?

We barely have time to live. When would anyone get the free time to advocate for themselves?

What we can do, from time to time, is share what goes on in our lives.

We can push our experiences into the public narrative about pain pills and treatment.

We can show the faces that are suffering as a result of the opioid crisis, and teach people the difference between depending on a drug to live a normal life, and addiction.

We can help people see that those who are addicted need help, not to be criminalized.

We can find the weak spots where criminals are gaining access to these drugs and eliminate just that danger, instead of treatment for millions.

Maybe, while we’re at it, we can find some alternative treatments for pain that actually work for everyone, rather than sometimes, here and there.

Until I can do better than share, I’ll be telling my spoonie stories, as often as I can, in as many places as I can. If you have stories of your chronic illness or chronic pain, I’ll hope you’ll share them with me so I can pass them along too.

Maybe when people see what it’s really like, they’ll want to help us. Or at least we can make it so we can’t be ignored anymore.

If you have a story to share and you want me to spread it, please use the hashtag #spooniedays and I’ll include you in what I hope will be weekly round-ups.

Next time, a list of other places you can share and groups that are organizing.