Monster

I have a sunburn. Today, I embarked upon that most quintessential New England autumn venture: apple picking. It was supposed to be about 70 degrees with a breeze and some clouds. Instead it was almost 90 degrees with a little breeze and a sun beaming directly down upon us. I always wear sunblock on my face and cover a lot of my skin, even in the summer, so it wasn’t too bad.

The sunburn is on my chest and shoulders. It’s not serious. It won’t blister. It looks red and angry and kind of hurts. Not a lot of pain, but there. Persistent. Stinging.

I have been sick a long time. And that means have been in pain a long time, too. There are lots of different pains and I know them all. I know the loose instability of stretching a joint too far. I know the burning of flushing skin and the stinging that remains after the flush is gone. The abdominal neuropathy that spreads like lightning across my midsection, electric fractals emanating from a central point. The hard swelling of my colon when fluid is trapped in the tissue. The way it feels like broken glass when my GI tract reluctantly moves things through its lower portions. The white hot fire of something passing over an open wound. The acid throbbing of vasculitis. The beating against the back of my skull of a terrible headache. The pressure of food that will not move as my stomach swells around it.

I have needed pain medication of one kind of another for several years. I have lived a very privileged life and I have been very lucky to have a medical team that has been largely the same for several years. My doctors know me pretty well. And because they have seen me screaming in pain and seen the damage that caused the pain, they are willing to help me manage my pain. It is a never ending process of adjusting medications and behaviors and foods but I have options that many people do not. I am lucky. Very lucky.

Drug addiction is a hell I wish on no one and one that has affected me personally in many ways. Heroin abuse is often a complication of opiate abuse: it renders a similar high but is cheaper and easier to get (as I understand it – I do not have personal experience with heroin). Sometimes people who are prescribed opiates for legitimate reasons become addicted and are forced to buy pills illegally or resort to other products, like heroin. Often, people with addiction come to heroin or pills another way, without ever having had a medical reason for using them.

Last year, the CDC made broad recommendations regarding prescriptions for opiates, probably the most well known drug class of pain killers. I had anticipated their recommendations with dread and I was not disappointed. In brief, their recommendations were that every other avenue for pain management be thoroughly exhausted before use of opiates, which would almost certainly render pain relief. The quantities to be prescribed were small and the courses short, irrespective of whether or not this was appropriate to the pain condition or realistic in any way.

Patients would all be drug tested frequently so that we could prove over and over again that we are not drug addicts. Our medication would not be filled without us proving over and over again that we are not drug addicts.

And for those patients like me who have debilitating, chronic pain, there were provisions for trialing removal of pain meds so that they could determine whether or not we actually needed them and if it was possible to reduce the dose at all. Most alarmingly, in my state, they adopted guidelines that could people like me to be evaluated by a doctor who knows nothing about me or my rare disease in order to determine whether or not I really needed these drugs. I am not an addict. I take my medication as directly. I fully comply with any and all guidelines and am happy to pee in a cup every time they instruct me to. But I am still afraid. I am afraid that I will do everything right and still end up in severe pain with no drugs to manage it because government agencies are conflating the epidemic of drug addiction with the necessary pain management of chronic pain patients. And that fear is getting larger and larger as time passes.

This past week, a large pharmacy chain in the US announced that they would only dispense seven days of opiates for “new” patients. There is already a lot of debate about what exactly this means but I guarantee it means more trouble and stress and fear for people like me. I cannot imagine a system in which a pharmacist can know my personal health and pain situation better than my provider of many years. What if the pharmacy decides I’m a new patient and just won’t give me more than seven days? What happens then? There are no answers yet on what will happen, but I don’t need to specifics to know that the people who will be most affected are people like me.

There are many practical reasons why this particular practice is a terrible idea. For one, it requires patients to be seen again to get a new prescription after seven days. For a pain situation in which a patient might need pain meds for a month, this would translate to four office visits instead of one. That’s four copays. That’s four trips with associated expenses. And that’s four copays at the pharmacy. That’s four office visits that already overextended provider’s office now needs to find time for. And when they can’t find the time, those patients may be left without any pain medications until the next appointment.

But these are not the reasons that literally keep me up at night so that I am writing this post at 12:50am despite being absolutely exhausted. What keeps me up is that no matter what, no matter what the intentions are for all these restrictions, and who they are supposed to affect, me and people like me will suffer. We already know what it is like to be treated like a junkie. We already know that we have to convince every provider we interact with that we use pain medication responsibly as directed at appropriate doses for our pain condition. We already know that we’re never totally convinced that those providers believe that.

But most of all, we know pain. And we know that in the current climate of increasing restrictions on pain management, we will have more pain than we used to. Pain that could be treated effectively if there was not such a stigma upon using opiates for chronic pain when everything else has failed. Pain we remember and are afraid of.

Pain is such an abstract quality to those who don’t live with it. People who don’t have it often do not empathize with those of us who do. We are often painted as lazy or attention seeking. Some day, those people will know about pain, and they will feel guilty then. But it will be too late at that point. People like me can’t wait for that day.

Pain is a monster with many faces that haunts every moment of your life. It eats our sore muscles and swollen joints and ruined organs and twisted bones. It eats and eats and eats until there is nothing left that suggests a person lived in this vessel. That there was once a life here, and dreams, and aspirations. That beautiful things lived here before they were destroyed.

Pain is not something you can overcome as a society by pretending the people who have it will be able to figure out another way to manage it when you rob them of their best tools. Chronic pain kills people. We know this fact. It is not disputed. Pain causes inflammation that can cause strokes, heart attacks, cancer. It causes despair and loneliness. It causes suicide.

I am afraid that we will not be remembered as the generation that overcame opiates. I am afraid that we will be remembered as the generation that pain destroyed. If we are remembered at all.