The happy thing for me this month is that I am celebrating the release of my essay collection, Pain Woman Takes Your Keys and Other Essays from a Nervous System. University of Nebraska Press continues to be a fantastic home for books, and I’m so glad to get to work with them. And I am glad to get these essays out into the world because they are so strange, and departing from a larger coherent narrative nonfiction structure is such a welcome respite–especially on the topic of pain.
I gave a talk last week at the Association of Writers & Writing Programs conference on the reasons why writing about pain made me run screaming from a linear narrative. I have told the story of my onset and symptoms of rheumatoid disease and other conditions to so many doctors, and it’s a mystery story that doesn’t have a convenient resolution. The narrative gives me no answers. It tells of my ability to adapt, to contain pain, but that is not what doctors want to hear. I once went into doctors’ offices furiously and desperately hoping for a cure, but I have slowly adapted to the idea that that is not in the cards for me. I have become a non-narrative, non-linear creature when it comes to pain. For that reason, I have let in all the weirdness, which was fantastic and fun.
Normally with a new book I would do a book tour, and I do have some dates scheduled over the next few months. However, with this topic–and with my body in general the way it is–I am thinking about how to reach people who don’t travel much or for whom getting out of the house in the evening and out to a bookstore is either an ordeal or impossible.
The question is: how can I do a reading for other people like me? Maybe I could do a reading in a mattress store where everyone could lie down. (That probably won’t happen but it sounds amazing). Or maybe–and this I’m considering more seriously–I could do a reading on YouTube live so people could tune in?
One cool thing I am participating in in April is an online workshop on Writing Chronic Pain through the “Survive and Thrive” conference on narrative medicine. I am excited to learn more about this as it seems like an awesome model for accessibility.
Let me know what you think–especially if you are a Pain Person. I am also open to Skype or FaceTime meetings with chronic pain support groups. I know there has to be a way to use technology to connect and do a form of reading that is accessible to people like me.
I get it. We have all just lost a guiding artistic light, and it might have something to do with a suspected overdose. Now we want to fix the problem, so “ban opioids” are starting to appear in my social media feeds. We can’t bring anyone back, but we can figure out the root of this problem.
I am in favor of what might help addicts, but in this case, fixing a problem is not as easy as banning something. There is a deeper problem, and opioid abuse is just one symptom. If you make opioids harder to obtain, you stigmatize my community, those with invisible illnesses and chronic pain. You make treatment and help even harder for us to obtain. We are so often seen as drug-seeking addicts.
People with chronic pain and severe health conditions often need opioids. The harmful myth is that everyone who pops painkillers is an addict. But many studies say that chronic pain patients are not the majority of those who become addicted; the pills often don’t give a “buzz” when you’re just trying to fight to function. Instead, they usually just help with sleep. In fact, there’s a huge difference between needing a pill to function and being addicted.
Dr. Howard Fields, professor of neurology at University of California, San Francisco, is quoted on “Here and Now” WBUR’s blog:
The greater problem is that there’s a huge reluctance in general of physicians to prescribe adequate medication for people who really are in pain and have a very low risk of becoming addicted. That’s the big problem. I think if you read the actual epidemiological data and the data from insurance companies and health organizations, it suggests that the vast majority of people are undertreated for their pain and I think that that’s in part due to the scare of overdosing and having the drugs diverted and making somebody who never was an addict and never had a drug abuse problem into an addict. My position on that is that’s very rare. I know people are being undertreated for pain. Opioids are the most effective pain relievers we now have. You want to use them optimally, but you want to use them when they’re necessary.
There are very few comprehensive pain clinics, especially for chronic pain.
Doctors may prescribe opioids too often for minor injuries that get in the wrong hands (this is called “diversion”), but the problem is not chronic pain patients, who manage their meds and know where they are. The problem is the 15-minute doctor visit, which is driven by a healthcare system more concerned with the bottom line that our health. “You hurt your shoulder? Here’s a scrip, I gotta go.” I believe there would be fewer unnecessary opioid prescriptions if we had a comprehensive healthcare system that was open to everyone.
If we had comprehensive healthcare reform, someone who did develop an addiction to opioids, they could get help—but right now rehab is also out of reach for many people without insurance. (It’s true, not genius singers. They could afford to go. Addiction is so hard and hearbreaking and stigmatized for so many reasons. And it often starts because people are in chronic pain and not medicated effectively, so they turn to a cocktail of their own creation.)
When someone dies of a drug overdose, don’t say that opioids are the problem, because in a country with a broken healthcare system, those drugs are one of the few tools for survival that people in chronic pain have to get through the day. Opioid abuse is a symptom of a deeper problem, and that is our healthcare system.
I learned about the Quell device earlier this week through social media. It isn’t cheap at $250 but after I dove deeply into the online user comments, I decided I had to buy it. Why? Well, as you may have reason to know or not, when you’re in pain, you want to fix that pain.
First, what is this thing?
It’s a little box that’s lighter than an iPhone but scored in the middle so it flexes. It fits into a pocket and gets snapped to sticky electrodes that go on your leg below the knee. Then the pocket-brace gets Velcro’d around your leg and off you go. It’s a version of a TENS unit but it is wearable and somehow sciencey-special. JUST GIVE IT TO ME!
I can’t explain the science; if you scroll down here you’ll see a helpful video. Having watched way too many YouTube videos of professors explaining the latest research in pain, this all seemed reasonable. But I figured the comments would tell all so I started reading blogs and so on, as well as user comments on Amazon, where people generally spare no rage. And most of the comments were very positive. So I thought, ok, it is a quarter of a thousand dollars, but on the other hand, pain.
I ordered it and it arrived two days ago. I have been wearing it ever since then. It comes with an app and connects via Bluetooth, so it tells you how much time you have left in a therapy session and how long to wait until the next one. You can wear it also while you sleep, and I have been.
What does it feel like?
It kind of almost feels like the leg that you’re wearing it on is a little asleep, which sounds annoying–but only if you aren’t in constant pain. You can adjust the strength of the therapy up and down so you don’t feel it as much. I’ve worn it while walking around running errands, walking the dog, walking on the treadmill, and for the most part I have forgotten it was there. The dog even got out this morning and I had to do a short sprint to catch her (ouch) and it didn’t come loose or impede my movements in any way.
Does it work?
This is why I am writing this blog, because I think it does help with pain. It might not help everyone, but here’s what it has felt like:
I notice a distinct difference in my pain levels when the therapy is “on” vs. when it is off. Today there were a few moments that my pain was at a 7 or 8 with it off (on a scale of 1-10) and then when I put the thing on again, the pain was down to a 4.5 or so. If you are in pain every day, you know that is significant and huge.
There’s an additional quality that’s hard to define but that I’ll call the pocket of my mind behind the pain. If you have had periods in your life without pain, you might remember a different version of your brain that was a little quicker, fresher, more alert. Pain is cognitively draining. I swear: I have felt more mentally alert, and I think it has to do with the drain of pain being eased enough that might concentration is slightly better. (Or all this is because I’m on spring break from teaching this week. If that’s the case, I’ll update with that sad news.)
I have autoimmune disease, so the other stuff that comes with that condition (fatigue, ups and downs due to weather, stiffness, and joint trouble) aren’t addressed by the device.
One thing about this device is that the goopy electrode patches seem like they’re going to attract dirt and get gross (like super gross) quickly. One electrode is supposed to last for 2 weeks, and I can already see that I’m going to be looking forward to that day. I don’t know if I’ll be able to make it that long. A 3-month supply of electrodes is $90, so this could add up. But then as I was sitting there this morning getting my leg zapped, I thought about how many times in the past 2 days already I would have paid $20 to feel slightly better, and I thought: 3. So that’s $60 already. (If you need rationalizations, I make them well).
You have to switch legs or give your skin a breather because users have said the goop irritates the skin under the electrodes. It’s recommended that you put lotion where the patches go. Fine by me.
The therapy is set to go an hour on, an hour off. So the off hour isn’t that good, because the pain comes back. But some people report that the effects of pain relief last up to an hour after a therapy session, and the effect may increase over time. So I’ll see how that goes. I have some weird thing against using it all the time. I don’t know why. Blame Catholicism or Puritanism, I don’t know.
Fashion backward? Maybe, but I do not care the slightest bit.
Another thing: and this might be just me, but today during a rough patch when the thing was off, I was wondering if maybe there was a rebound effect. Could I become dependent on this effect? Was my pain worse during the between-times? I don’t know.
To sum up: It’s not a drug, it won’t wreck your guts, it’s FDA-approved, so there you go. My two cents and two thumbs up.
You might see someone limping with a cane down the halls, and then a few days later they’re fine. Or you know a co-worker has lupus and you are not sure what that means for their role in your project. Or you are just empathetic but unsure. I am not an authority on invisible disabilities, but I do have a few–two autoimmune conditions including Rheumatoid Disease, which affects my movement and produces pain–so I thought I’d take a stab at some imaginary questions. I’m not an HR professional. This might be incorrect! It’s just my thoughts. Feel free to leave other questions in the comments.
Is a person with these conditions (which I’m going to describe as invisible disabilities) less able to work?
Unless they are a lumberjack—and maybe even if they are a lumberjack—each situation is unique. Jobs are a fit or not a fit for a wide range of reasons, and determining that fit is the right of the employee, the supervisor, and HR—not you. Instead, check your own thinking: are you assuming that when you see signs of physical impairment, there is cognitive or motivational difficulty? There might be those, there might be others–but it’s probably not something you are qualified to evaluate. I can ask that difficult question because I have a sometimes-visible disability and yet I too berate myself for being less capable. I’m not less capable. In fact, in some ways I’m more capable, for reasons I’ll get into below.
The truth is that a person with a chronic condition who is employed is actually a wonder of neuroplasticity and adaptation. People can adapt over time to conditions that would be unbearable if they emerged suddenly. They are forced to grow their lives around amazing challenges and yet make life work, to be functional.
If I have someone with a chronic condition or an invisible illness on my team, is that going to affect my due dates? What if they have to go into the hospital?
Not everyone who has one of these conditions needs time off of work, but every single person alive faces the unknown of illness and hospitalization. Cross that bridge when you come to it, but you do not need to expect any additional degree of unreliability from someone with a chronic condition. That’s a misconception about the nature of chronic illnesses. If there’s a serious issue, the person will make you aware of it.
In what ways is a person with an invisible disability or chronic illness a wonderful employee?
Hahaha—that’s a great question. (I might have planted that one). A person with these conditions can be a great liaison to other employees and to potential customers with these challenges. He or she can help you adapt your business, your website, your services, to the needs of this huge population. A person with these conditions is often a complete wonder of efficiency, because he or she has had to make difficult choices with regard to precious energy and time that can’t be squandered. People with these conditions get as much or more done because they know their own energy levels and work abilities intimately. They are mental and emotional athletes. They often have a high degree of empathy, and in some cases their ability to design work-arounds in their own lives has resulted in enhanced creativity for out-of-the-box solutions.
Should I give the person extra leeway with deadlines, etc.?
That’s not necessary unless they ask for it—like any other employee that needs a flexed deadline. And we all do, for all the shit life throws at us.
Some days a person has visible aids, like a cane, a cushion, limb or hand supports. Does that mean the person is feeling his or her disability most acutely and that it is gone on other days?
Actually, no—not at all. One of the difficulties of an invisible condition is that the discomfort is usually chronic. A particular aid might be called for on a particular day, but the hardware just means that a specific part is having difficulty, and does not even act as a barometer for when the worst days are.
When I see a person with one of these aids, does it help to express sympathy or to ask how the person is doing?
This is a very individual thing, but in my case, the answer is no. I want to try to normalize my condition, to have it be a part of me but not the most obvious part. I want my coworkers to understand that some days I have my hardware and some days I don’t—but that every day is hard. Because every day is hard in different ways, expressing sympathy only when the hardware appears makes me feel a little like the person doesn’t get my condition (it’s fine if they don’t—I barely get it). The worst part, however, is to associate my cane with a sad expression and the need for sympathy. I love my cane. I love it. It helps me walk, it announces my disease as visible, and it does a lot of other things for me. The worst days are the days you can’t see. So when you see me with a cane, just say hi.
Should I suggest various things that have worked for my niece’s boyfriend or that I have seen on Facebook, such as supplements, yoga, etc.?
No. These people are barraged with well-intentioned advice. Think about what it must be like to have a life-long condition that other people assume is easy to fix when in fact doctors have pronounced it incurable. What you are saying to the person is that they have overlooked something obvious and so therefore that they might be a little dumb. You don’t mean it to sound that way, and you’re just trying to be helpful, but it’s a little insulting, and it doesn’t help to build connection.
Should I use this person’s condition against them in power struggles and office conflicts?
Hahah! You’re FIRED! No, seriously: This is probably too obvious to say, but it needs to be said: if you in any way imply that the person is less able to do their job, is weak, is less qualified, or is a burden, you are not only wrong but you are also doing something that is immoral, unethical, and illegal. You are bullying based on physical ability, which is reprehensible.
I have a completely serious proposal that could do good for people and make someone some money (….and that might be the most American thing I’ve ever written). Here’s my vision: facilities modeled on health clubs that are specifically targeted to people (including but not limited to the elderly) with chronic pain, mobility, and mental health issues.
There are three health clubs in my not-affluent town all competing for the market of the physically fit and exercise oriented, while another demographic is offered no services.
These facilities would be membership-based and would be attractive for people who need to get out of the house and relax, but whose issues make the traditional clanky, loud, screaming décor, industrial design of a gym completely awful. Modeled partially on the idea of the public baths and saunas of Europe and the Middle East, these facilities would be soothing and focused on the needs of people with limited mobility. The goal would be stress relief through completely simple physical support, including nice low-light rooms with aromatherapy, heated lounges, nice towels, and views onto natural environments. A range of options would allow people with a range of challenges to have the social interaction so necessary for health in an environment built for them. Medical waivers would protect against liability, and additional revenue could be generated by offering newsletters in which traditional and alternative healthcare providers could advertise their services to this targeted market. (See? I can totally talk the talk).
The health outcomes of greater socializing, stress relief, and even connection with healthcare services would make these facilities attractive to health insurance companies, who might offer their patients premiums and discounts if they were to join and use such a facility.
Low-key yoga and balance classes, tai chi, etc.
Saunas, hot tubs, steam rooms for heat therapy
Mats for stretching
Benches for just sitting around
Soothing music and rooms with no music
Rooms for meditation or just chilling out
About me: I’m a good writer who has been marinating in corporate language and mindsets for 16 years (i.e. in higher education). So I know the lingo about synergy and stakeholders. I could sell you my idea or consult. I’m totally serious. I have tons of ideas and I’m even sometimes funny. Admit it: this is brilliant. One of these should be in every town including mine.
When chronic pain people go to see doctors and specialists, we are often asked to rate our pain on a 1-10 scale. Somehow I always get confused by this instrument, partly because I don’t know what each level means. For that reason, I’d like to propose this alternate 1-20 scale (it was 1-18 but I added a few)
(This is meant to be funny for people in pain, so no need to feel bad, be upset, etc.)
1. I have bold plans to revamp diet or try new stretches out of desperation borne by last night’s pain, and I am overjoyed and energized that I am not right now in pain.
2. I’m busy-busy-busy because if I move fast, the pain won’t catch me! And I’m in motion now, but once I stop, maybe I’ll be stuck to the couch with glue.
3. God, why am I so bitchy? Oh, wait–I’m in a sort of grinding, background-noise, world-clenching box of pain just beneath the edge of my conscious.
4. Couch. All I want is my couch and Netflix.
5. Wait, I’m kind of unsafe to drive just because I’m in pain. Like I can’t think clearly. Wait: does that mean I’m high on pain itself? Did I invent a free and unpleasant way to get high? Everything is totally funny. Pain Vegas!
6. Get the heat things and the cold things and the tiger balm and the various ointments and salves and put them all on me immediately.
7. Don’t fucking touch me.
8. Oh my god, do you still love me? Someone tell me they love me because I worry you hate me when I’m in pain. Am I irritating? Is it hard to love a near-invalid?
9. We need to check on our long-term disability policy. Do we have long-term disability? What if I can’t work anymore? Oh my god, I can’t go to work tomorrow but I have to. We need to make a Plan B right now. What about eel farming? Can we put eels in the pond behind your parents’ house? Could we live on that? We should start buying cans of soup on sale and putting them in the basement.
10. Everything is so beautiful and precious because I might die soon. I love that lampshade so very much.
11. I hate everyone and everything is bothering me and making my skin feel gross and I hate this couch where I’ve been lying for hours and I just want a shower but the thought of the effort of a shower makes me want to cry.
12. I was born to play video games on my phone. I am good at this.
13. I can’t read. The sentences are too hard. Remember when books?
14. I can’t watch TV. I’ll just scroll through Facebook in a fester of something unpleasant but even the blue hurts my eyes. Look at all the well suckers doing things, completely oblivious to their looming deaths and physical disintegrations.
15. I can’t even play games on my phone. My last stupid pleasure has been taken from me and I wish to lodge a protest with the universe.
16. Where are the drugs? Oh—I stopped taking them because they wrecked my stomach. Where is that old bottle with the prescription from two years ago?
17. I don’t even care about the drugs because I’m learning something from the pain. It’s making me deep and spiritual and I see shapes and colors. If I just roll with it I can surf the pain. I can.
18. No I’m not learning anything. I need the drugs and the pain needs to be killed.
19. Mommy? Oh dammit I’m the mommy. Oh just breathe like you’re in labor. It will pass. (Except there’s nothing good at the end, except maybe you will give birth to a horrible gooey thing like in the movie Alien that will come and bite your face off.) Will someone please feel sorry for me immediately?
20. Words are hard. My name is… something? Whatever. Name.
21. Do I have food poisoning? Wait, am I hung over–did I do tequila shots last night and have a great time that I don’t remember? Oh no, it’s just pain-barfs. (This is a new edit and I don’t like to have to add it, but the research is an ongoing process)
I’m working on a project about the experience of chronic pain, and I’m aiming for it to be not literary but still thoughtful and mutual-helpy, a kind of daily reader for chronic pain folks. I’ll be posting excerpts here occasionally to help demonstrate an interest as I shop a proposal around.
The standard world, the majority, seems to operate on a daily basis without some form of excruciating or annoying physical pain. I can “pass” as normal in that world, which is a place I used to live all the time. But now I live somewhere different, and here, my body normally has pain. Pain—the signal that something is amiss, wrong, or bad—is okay here. I don’t mean that I like it. I mean that pain is nothing surprising here.
The pain experience itself is that red flashing bulb in the background of my day: danger, danger, danger. Especially when I’m tired or run-down, and especially when my pain overwhelms me, I often take on the world’s negative judgments of pain as well as the pain itself. If I am in pain, I am bad, wrong, amiss.
Here I am on the couch, on a day I had to call in sick to a meeting. I am waiting for a call from one doctor and I know I have to go to another doctor this afternoon. And all throughout my body, the danger signs and red lights are flashing: abnormal, amiss, wrong.
I am living in that red glow, but after five years of it, I have managed to make a transition in how I see it. I first went through a solid year of panic at how horrified I was to be in pain all the time. I had pain, and then I had mental pain about the pain. Gradually, over the following four years, I began to understand that that red flashing light of pain had to become the new normal for me. I have an incurable disease. That doesn’t mean that I as a person am abnormal, dangerous, or amiss.
I still go into that panic rejection of pain almost every day, but most of the time I can separate the two strands of discomfort from each other. I want to hate the pain without hating my life for having pain in it.
I have to constantly remind myself that the pain is not a sign of failure and that I am no longer living by the standards of normal bodies. For me, this pain is perfectly unsurprising. Some days are down days. I am well within what is normal for my body. For me, this is no failure. This is how I live, and one of my goals is to get a real sense of my body’s range rather than judging it by what other people say their bodies do and feel like.
If I can remember that, I have one less thing to pile on myself as I’m laying here, trying in a half-hearted way to respond to work emails. I’m getting stuff done, and then I’m resting, by the light of this red flashing light, and although it’s a little glaring sometimes, it is my life. This is my normal, and my body is well within the range of human experiences. I am not abnormal. I am on the bell curve and part of the human community. Some of us have pain and we are still people, exploring the full range of what it means to be alive.