The Calculus of Pain

I’ve often marveled at the typical pain reliever commercials on tv these days. Whether it’s pills, cream, or braces they all tell you how you can feel better and do whatever you want. You’ll see Shaq promoting Icy Hot and playing basketball, or Voltaren showing an old man dancing like he’s twenty. I’ve often wondered, for how many people does this work? I already know nothing I take, except opioids, can help me get up and go. But even then, it’s limited and short-lived.

Photo by Anh Nguyen on Unsplash [ID: Woman at table with a mug, hand to her head in pain]

When my mom talks about how taking two pills of Aleve can help her deal with arthritis, I know I’m living in a different reality than she is. In her reality, her pain meds aren’t demonized, and over-the-counter medicines actually work. Meanwhile, over on my planet, everything I do potentially leads to more pain and I worry every month if my pharmacy will decide to just not fill my medication. I’m lucky and grateful I have access to my medication, but is not treated like other prescriptions, which is incredibly frustrating.

In fact, the more I thought of it the more I realized how people don’t understand that for some people pain dominates every aspect of our life. To start, we must make sure we track our prescriptions and pills, making sure we have enough to deal with flares and high activity days without running short before my next refill. Then I have to decide what activities I can do for a day and how much can I push myself. Do I have enough energy for these tasks? Will a certain task cause a pain flare and ruin the plans I have the next day? What are things I can do to minimize the inevitable pain a task will cause? How much time do I need to recover? Will the people in my life be understanding when I have to cancel because of pain? It’s like a daily calculus I never wanted to learn in the first place.

There is a well-known essay that put forth The Spoon Theory, which helped to explain the energy rationing disabled people often have to deal with. The essay used spoons as a visual for your energy for the day and removed them for even the simplest tasks like brushing your teeth and cooking. Little actions that abled people can do without a second thought are often huge mountains for disabled people to overcome. This is partially what I’m talking about. Energy rationing is not that much different from pain rationing, I just think there’s an extra level of complications thanks to opioid stigma. Deciding when you get to take an extra pain pill for high levels of pain may mean you don’t have that pill for a flare down the road that is even worse. Someone who takes Advil for pain doesn’t have to worry about making the pills last because of arbitrary restrictions.

There’s no world in which dealing with severe chronic pain is simple, but it could be simpler. We can stop stigmatizing pain and making pain patients jump through hoops to get necessary and beneficial pain medication. In some places, pain patients can’t even get a month’s worth of opioid medication in a desperate attempt to stop pill diversion. Focusing on asinine rules like this will never stop a crisis that is driven largely by illegal drugs.

I know those of you reading this can’t change this problem. However, I can tell you one thing that can make a difference: checking in on the disabled people in your life and doing your best to accommodate their needs so they can take part in social events and enjoy going out. You will never know the scope of decisions someone has to make to deal with pain, but you can do your best to try and make these choices a little easier.

Recent JAMA Study Shows Forced Tapering Caused Pain Patients to Use Illicit Drugs.

Another conclusion of the Journal of the American Medical Association (JAMA) study, published earlier this month, showed that forced tapering triggered more mental health crises and overdoses. I hear this and can’t help but remember how many times — since the 2016 Opioid CDC Guidelines were published — I said this would be the outcome.

Photo by James Yarema on Unsplash – [ID: Prescription bottle with pills spilling out.]

I suffered from the first waves of opioid cuts and tapering. I was denied opioids despite suffering from severe back pain that was eventually diagnosed as degenerative disk disease. At the time, I turned to marijuana, which is approved for medical use in my state. It wasn’t enough, and I considered seeking out black-market opioids. Fortunately, I was given access to opioid medications after a few months and did not have to go down that road.

When you’re disabled you often have a lot of doctor appointments, and when the 2016 CDC Guidelines were first announced I couldn’t help but comment on it. I said that the guidelines will drive more pain patients to illicit drugs. Some agreed; some didn’t discuss it; and one nurse said, “I hadn’t thought of it like that.” That response was the most frustrating of all. Shouldn’t a nurse know that taking someone off a medication based on a guideline and not their health means these patients’ need for pain relief has not abated? They’ve been stripped of a pain regimen that helped them live their life with less pain; yoga won’t help. Many will continue to want the same level of pain relief — as they should — and yet access has been extremely limited.

Furthermore, being in pain is in and of itself a mental health crisis. If you do not suffer from chronic or constant pain, you can’t know how changing and life-altering it is. It seems to me that without question, reducing one’s pain medication inevitably leads to more crises.

In a world that likes to assume anyone seeking help is just “crying wolf”, so many find it easy to deny people pain relief. Especially by labeling us as drug-seekers, as if they can easily and objectively distinguish between people in desperate need of high-level pain relief and someone acting for a high. I’ve personally been kicked out of a hospital and called a drug-seeker because the nurses and doctors thought my actions, due to pain, were drug seeking. Pain patients that don’t fit a perfect mold are often labeled drug seekers just because they asked for an opioid that they have used before, safely and effectively.

While the study is small and limited in scope, I feel it vindicates something I have said for five years now. I don’t doubt further studies and analyses will continue to show a similar result. I believe addicts deserve help, but this study shows me that society’s current attitudes towards addiction and opioids are killing addicts and chronic pain patients alike.

The CDC has claimed they will be updating their 2016 guidelines, but for better or for worst? They lost my trust a long time ago.

Call to Action: Support the Supplemental Security Income Restoration Act!

Supplemental Security Income (SSI) is a government program for disabled and elderly citizens. Unfortunately, it has not been updated since 1989 – I was a four-year-old at the time. As it stands, the current system keeps recipients below the poverty line with insufficient income and strict rules not allowing recipients to save more than two thousand dollars. Many disabled SSI recipients cannot marry without losing their benefits, meaning the United States of America is still not a land of marriage equality.

Fortunately, there is a chance to change things with the new SSI Restoration Act. Fix Supplemental Security Income in 2021 is a new website that can help you take action. It is full with information all about this bill, as well as an easy-to-use tool that helps you email your representatives in a few easy clicks. There is also a phone option, but for disabled people like me who struggle with using phones, the email option could not be easier. It helps you find your representative and includes a script so you don’t have to write anything of your own if you don’t want to.

So please, head over to fixssi.com and take action!