Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at FWD/Forward.)

I am quite fond of the pharmaceuticals I keep organized in my nightstand drawer. But I have to be careful not to drop them, so that the cats don’t find them and try to eat them.

But now, there’s a pill I can drop on the floor and let my kitty chew on all he wants! And if he tires of that, he can roll the bottle cap around the kitchen floor for awhile.

(A screenshot of the Etsy page for a pill-shaped cat toy. Several pictures are shown of a long-haired ginger tabby cat enjoying the catnip-filled, half-red half-blue felt toy, and the plastic orange pharmacy bottle with a prescription label reading “Catatonica.”)

The item description:

These jumbo pills contain a healthy dose of extra strength cat nip – just what the good doctor ordered.

Each pill measures approximately 3″ long and each vial contains two.

So get to the pharmacy STAT! You’ll want to make sure you have plenty of “mothers little helpers” on hand.

DOSAGE:
Take one down, bat it around, kitty is sure to have a ball.

POSSIBLE SIDE EFFECTS:
Temporary ants-in-the-pants followed by extreme drowsiness. Increased appetite not uncommon.

Only $8! I spend way more than that on my human medications. Check out kgrantdesign’s shop for more deliciously cute kitty toys. Next up: fried eggs and bacon.

(Cross-posted at FWD/Forward.)

I take six medications. Five of them — the antiepileptic, the antidepressant, the non-narcotic pain killer, the muscle relaxer, and the oral contraceptive — are covered through a mail-order service. I receive a 90-day supply in my mail box every three months. No hassle. If a prescription runs out, my doctor is notified electronically, he then sends the new script electronically, and everything proceeds as normal with absolutely no additional step required of me. The only thing I do is click on the check-out button on the web site every three months. That’s it. No calling. No physical piece of paper to pick up. No wait at a retail pharmacy. Just a click and several days’ wait.

There’s one other medication I take. That medication serves the exact same purpose as all five others: it relieves my pain so that I can get on with my daily functions. I take it regularly, just like all five others. I have been taking it regularly for over five years now for the same reason. But this medication is not covered by the mail order service, because it is not considered a “maintenance medication” — despite that it fills the exact same maintenance role all five others fill, just by a different mechanism.

So for this medication, I am only allowed a 30-day supply at a time, and no refills — a brand new script each fill, which requires my doctor’s input each time. I have to call my doctor no sooner than the exact day it was filled last month, unless it falls on a weekend in which case I might get away with calling up to 2 days early. Then I have to call back a couple days later to see if the script has been written. If it has, it is printed out, and I have to physically walk in to the office, stand in line to see a receptionist, have them take a copy of the script with my photo ID, sign and date the copy, and walk out with the script. Then I have to physically take it into a retail pharmacy, wait in line, hand it to the pharmacy technician, then wait the required time for it to be filled. If there are no problems with my insurance, I then must physically present myself and pay for the prescription. Then I can walk out the door with my medication.

(And this is the process with a doctor who’s relatively friendly about the matter.)

It is quite a different process and one overflowing with “veto points” — points at which any party involved can cause any sort of problem and stop the whole process up. Maybe my doctor is on vacation and won’t be back for two weeks. He is the only one in my clinic who will write this script. I can’t call earlier in anticipation of his absence; they will not write the script before the last runs out. In that case, I’m stuck until he comes back. Maybe the system spits out some sort of error, like the one I received today: I was told the script must be written by my original prescriber. Which is this doctor. So now they have to go back and ask for the script all over again, and he isn’t in til tomorrow, and it’s not guaranteed to go through smoothly then. There have been other errors.

Maybe the insurance says no. For any number of reasons; I’ve dealt with prior authorization errors, quantity limit errors, errors because my insurance has suddenly decided to list me as living in an assisted-living home and cannot fill a prescription if I am. Maybe the pharmacy hits a snag, like the time they would not fill a written prescription until 2 a.m. that night because the insurance company said so, even if we paid out of pocket without billing the insurance.

And I’m going to keep running into these issues, and I will run into new errors every few months. I may have solved the last problem, but there’s always something new to pop up. I can never rely on this medication being filled on-time. It simply does not happen the majority of the time. No matter how diligent I am, how patient I am, how clearly and politely I explain myself — or how despondent I get, how emotional I get when telling them but I cannot work without this medication, and I don’t have leave on this job, and I can’t afford to be fired for missing work. Or whatever other pickle I’m in at the moment. It doesn’t matter. I do everything right and there will still be regular problems in getting my medication filled on time.

I’m sure, by now, you’ve figured out that this particular medication is a narcotic pain killer — hydrocodone (generic for Vicodin). I take it for chronic pain. I have been taking it for over five years this way, with the doses varying between one-and-a-half per day and three per day. And the only medical trouble I have ever had on it is when there was an excessive delay in refill during a bad pain flare and I got to go through the withdrawal for two weeks. (And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal.)

Narcotic pain killers can be a valid option for chronic pain patients. They fill a void left by other treatments which still aren’t effective enough to address our symptoms, which can easily be disabling. As you can see, I take plenty of other medications. But if I want to be able to get up and do something, I still need the pain relief the hydrocodone provides. So I take it. Because I like to be able to get up and do things. Like make the bed in the morning and feed the cats and make myself lunch and possibly run errands. Or — you know — work. Those silly sorts of things.

Here’s the thing, though. In both common culture and the medical industry, chronic pain patients who take these medications to be able to perform everyday, ordinary tasks that currently-able people take for granted — like bathing or showering or washing dishes or dropping their kids off at school — are still constructed as an addict just looking to get high.

You could almost kind of expect that for the narcotics. Most people do not understand the distinction between addiction and dependence. (Which is, basically, the distinction between taking a medication for a medical purpose so that you can go on living your everyday life, vs. taking a medication when you have no medical need so that you can escape from your everyday life.) This distinction exists for a reason; developing a tolerance for a medication is not a bad thing in and of itself, and must be weighed against the benefits that medications brings to the person.

Addiction calls to mind, though, a life being torn down. Addiction calls to mind a person who is seeing the detriment of a drug outweighing the benefit. A person whose life is falling apart because of the drug.

A chronic pain patient taking a narcotic pain killer under the close supervision and guidance of a knowledgeable doctor is exactly the opposite: sie is a person whose life is coming back together because of the drug.

But this image is not easily shaken in people’s minds. And so the chronic pain patient is reimagined as the addict. Hir behaviors are twisted to fit the common conception of the addict. If sie ever lets out a drop of disappointment at having problems with accessing this medication which is helping to put hir life back together — that is seen as drug-seeking behavior. And if sie lets out any sort of relief at the feeling sie experiences after taking the pill and having the crushing weight lifted from hir muscles — that is seen as “getting a high.” Heaven forbid sie show any emotion beyond just relief — like perhaps pleasure or happiness — at being able to perform everyday functions again. And any moodiness or other undesirable behavior can be easily attributed to hir “addiction.”

What’s strange, I notice, is that this reimagining is applied not only to chronic pain patients who take narcotics — but to any chronic pain patients who takes any pain relieving drug.

Take, for example, the anti-epileptic I take. It is not a narcotic. It cannot be abused — that is, if you do not have a neurological pain disorder, it will not do anything for you. You can’t use it to get high, get low, or get anything — except a couple hundred dollars poorer every month.

The only way this pill does anything for you is if you have some sort of nerve problem. And even then, the effect isn’t a “high.” Rather, it levels your pain threshhold — brings it closer to “normal.” No artificial mood effects, no giddiness, no lift. Just level.

And I still see this medication treated very similarly. Patients who take it are described in the same terms you would describe a drug addict.

And it’s just one of many. Any drug that relieves pain for a person with chronic pain will be painted in the same strokes.

At issue, here, is the conventional wisdom that our pain is imagined, that it has no real basis, or even then that it isn’t as bad as we make it out to be. That is the belief that feeds this twisted construction.

Because if you are imagining your pain, there is nothing legitimate you could be getting out of that drug. And if you aren’t getting anything legitimate out of it, but you’re still taking it — and getting upset when you don’t have it — well, that’s classic addict behavior, isn’t it?

If our pain were recognized as real and legitimate — if those messed-up-in-so-many-ways Lyrica commercials didn’t start out with “My fibromyalgia pain is real!” — this wouldn’t happen as much. Because if our pain is real and legitimate, then it is real and legitimate to seek relief for it.

(Of course, that assumes that pharmaceuticals are accepted as a real and legitimate way to relieve that pain.)

But people are going to have trouble with that. They don’t want to accept our pain. They don’t want to admit that it is real. They want to keep believing that it must be imagined. Because then, they can comfort themselves, in that murky area beneath our conscious thought, that they would never end up in our situation. They could never end up with any sort of medical condition. And if they did, well, they know how to do everything right, so they would never be affected by it.

This is why they scoff at our assertions that our experiences are real. This is why our conditions are jokes to a great many people. This is why “fibromyalgia is bullshit” has been the leading search term to my blog. This is why they seek so desperately to deny that these drugs — any drug — could be having a legitimate effect on us. This is why they treat us like addicts. Because they can see how we might reasonably be having real pain, and they can see how these drugs might reasonably be legitimately relieving it, and they can see how we might reasonably be upset if we are consistently denied access to the one thing that allows us to live our lives the way we want to.

And if all that is reasonable, then — shit — they could wind up in the same place someday. And none of their can-do bootstrap individual determination could magically get them out of it.

Addicts we are, then.

This post is in two parts, the same story, told with different but parallel focus.

***

Once my endometriosis was diagnosed, my gynecologist said that my best choice for treatment was an injection called Lupron Depot.

Because the endometriosis small and diffuse, surgery was not an option — there were no large masses that could simply be cut out — rather, it was more like a thin layer covering everything in spots.

Lupron is a gonadotropin-releasing hormone antagonist; it is used for a variety of things including chemical castration of male sex offenders. In women with certain reproductive conditions, it works by stopping the production of the hormone estrogen in the body. Estrogen is what tells the endometrium to grow, and therefore what inflames the endometrial implants outside the uterus. Therefore, by stopping the production of estrogen for a set time — six months; twelve if the first six were unsuccessful — you would hope to shrink the implants that are already there. Essentially, what you are doing is inducing a six-month menopause.

Lupron is not aspirin. It is not a trivial drug. It makes serious changes to your body. Most women do not finish the full six months. I did, and the nurses were genuinely impressed when I came in for my last shot. None of their patients had ever taken a full round before.

And if the pain comes back immediately after stopping — which, in me, it did — they want you to go a second six-month round. (That is the limit due to risk of developing osteoporosis.)

Honestly — I kind of want to know the women who actually made it through twelve months of that drug, if my nurses had never seen anyone make it the first six.

It was not a fun six months. At all. (This is how it felt in real time.) I earned six months without any periods (I would have gone through one or two in that time on my birth control, so it wasn’t a huge benefit) and a couple months’ reprieve from the pain. In exchange, I went through numerous side effects, from the awful spasms, dizziness, fainting and tremors to considerable hair loss to hot flashes and uncontrollable sweating to sudden overwhelming nausea to weight gain.

And now, ten months after stopping the treatment? I wish I’d never done it.

I didn’t start birth control until age 19. Until that time, I was letting my body go through its natural cycle. Which must have been brimming with estrogen, because the pain was bad. It kept me out of school at least 1-2 days a month for period pain alone (before we even consider my fibromyalgia). It is by far the worst pain I have ever experienced — even with the awful migraines I get where, literally, a twitch (anywhere) causes so much pain throughout the body that I want to scream, but the movement and force required to make any sound at all would hurt just as much — so I stay stiff and silent and suffer until there’s enough of a window to down some pain meds.

The cramps I get on my “natural” (no hormonal medications) period — the pain comes in waves, crashing over me, exploding through every ligament and nerve in my body, rolling up and down the length of my torso. I spent many days in the fetal position on the floor of the bathroom, wishing I could just cease to exist right then and there, in too much pain for the thoughts to ever get as far as “movement to make it happen.”

And, well, suffice to say it affected the bathroom cycle too. I’ll leave it at that.

The pain, even in between cramps, is bad enough that I could not sit upright for more than maybe an hour’s total time throughout the entire first day — I was either in bed, on the couch, on the floor, or lying down in a chair in front of the computer. And the rest of the week, it was difficult to stand upright and walk — I needed to reach out a lot for balance; I couldn’t straighten my back it hurt too bad. There was this intense heavy pain in the muscles of my upper legs. And I needed heat — bad — any cold or dampness felt like my blood was turning to acid and eating me inside out. I reveled in the sun; I couldn’t leave the house without heating pads; I sat down under the hot hot water in the shower. Wintertime (which, in central California, got as low as the 40s during the day, but was damp and moist with fog) was excruciating.

I went through all of this approximately one week (or a little more) out of every month in my adolescent life. And this is all ignoring the actual period.

When I got on birth control — after a brief period on a tricyclic medication (Ortho Tri-Cyclin Lo), which made me break out in painful cystic acne and left me irritable enough that a fly could be cause for an angry breakdown — things settled down somewhat — especially after a kind gynecologist prescribed a low-dose monocyclic pill (Mircette) continuously; that is, skip the placebo week in the pack, taking four packs in a row before allowing that period week. That meant one period every three months, and a lightened period at that — it was still very painful, but not suicidal-thought-inducing painful like it was “naturally.” And during the twelve weeks on the hormones, I was mostly free of the continual lower abdomen/pelvic area pain that I suffered even between periods on my “natural” cycle.

I stayed like this until the beginning of last year, when the lower back/pelvic pain set in to stay, leading to the diagnosis of endometriosis and the Lupron treatment.

And after the Lupron, now — back on that same low-dose pill, taken continuously — I am going through pain that is far closer to my “natural” cycle pain than to the pain I went through for the three years prior to the Lupron. I am having cramps that sometimes keep me from being able to move to get out of bed in the morning and sometimes hurt so bad I have to get up because it hurts too much lying down. The back pain continues; my methods of treatment are definitely helping considerably, but the pain is more persistent and more severe than it was last year. My, um, “bathroom cycle” — which was relieved of pain completely during the three pre-Lupron birth control years — has returned to the cycle I had before I ever started hormone treatment. The only thing that hasn’t returned is that lead-like pain in my leg muscles, that acid-blood feeling.

And it is frustrating me. I wish I had never started the Lupron in the first place. I read up on it before agreeing to take it, and I knew there were a lot of horror stories and a lot of women really, really hated it. But what other treatment did I have? this seemed like something that — even if it was difficult during — would make a difference in the long run. So I did it, and I stuck it out, because how would I know what good it could do if I quit?

I don’t know if maybe it’s because I spent that six months estrogen-free, and now I am on a pill which, though low-dose, does contain estrogen — so suddenly my body is feeling an increase in estrogen, thereby causing more inflammation and therefore more pain. I have no idea; I do my research but I am still a layperson. But there can be no argument that my situation is considerably worse than it was before I went through the Lupron. And it’s been this way for ten months. This is no mere readjustment.

***

Next post: on the visible physical changes, body-image adjustment and dysmorphia.

After getting kicked off my low-income health insurance at age 18, going several years uninsured and uninsurable, sticking out the 24 month wait after being approved for Social Security disability payments before I could join Medicare, and then losing those payments and that Medicare because I had the temerity to get married (according to our system, my husband is not an equal partner but, because I am disabled, my expected caretaker, thus removing the burden of care from the state), I finally got a taste of the insurance all those class-privileged people have — you know, employer-based insurance (that actually is insurance and not those fake “discount plans” or “you can pay us a premium, but we don’t actually cover anything a human being might need” scam plans that low-skill employers offer to give the appearance of being socially conscious).

I am lucky that my husband is employed by the state, and represented by a strong union, so his health care benefits are good.

I was upset when I had to transition from one side of provided-by-the-state care to the other, because it was considerable work for me and for my health care providers, but over time I have come to be immensely grateful for my husband’s benefits. Rather than filling 30-day supplies of my medications at retail pharmacies and, every month, running into some hang-up or another that left me without one of my medications, or having to space out my medications, for days or weeks at a time, I now receive all but one of my medications in full 90-day supplies (including four packs of birth control pills, not three!) with no hassle. I order the medications online, and if the prescription is run out, my doctor is notified, and he sends a new one in electronically, and everything proceeds as normal. My medications arrive in the mail within days. It is the easiest it has ever been for me.

So now I am free of what was probably the biggest burden I had to bear in obtaining reliable health care. The only medication I still receive a 30-day supply for is my Vicodin, which is not considered a “maintenance medication” (despite filling the same function as my Lyrica, tramadol, Effexor, cyclobenzaprine and Mircette) and thus must be filled retail. Even that process has been considerably smoothed since the insurance switch, though not devoid of problems entirely.

And now I never have to deal with obtaining a referral for anything that wasn’t a yearly checkup with my general provider. And I have a single insurer, rather than feeling guilty every time I handed over my four insurance cards to my doctors (my retail employer’s scammy discount non-plan, my Medicare plan, the separate HMO for my MAWD and then the MAWD itself) and knowing the billing hell they were going through just to get payment for their services.

Alas, though: my troubles are not over. My husband’s insurer, like so many other employer-based insurance groups, has become enamored of these “incentive programs” that are supposed to, you know, “provice incentives” for patients to “lead a healthier lifestyle!” Mainstream conservatives and liberals alike seem to love these things. It’s a way to pretend you’re addressing the God-awful fucked-up shabby mess that is the American health care system and its soaring costs, but without actually, you know, doing anything to make these patients healthier. Actually paying for the health care they could use? Pfah! No, just “incentivize” them to exercise more or stop smoking.

These “incentive” programs, more often than not, do not take the form of an actual positive incentive for such “good” behavior. More often, patients feel the effect of a negative punishment for not being the Super Fit And Healthy Ideal Able Body. They end up paying more in health care premiums (by losing out on a “discount” for being a successful participant) or losing their health insurance altogether. Or, they simply feel the burden of having to jump through hoops no able-normative person would ever have to — the second shift for the sick.

These incentive programs would not be worth the money and effort if there were not a stick behind that carrot, a way to enforce good health on the people. It should go without saying: health is not something that should be enforced.

My husband’s ensurer has a yearly health survey that all participants — including every covered family member — must participate in to be eligible for the lower premium. This is not a five minute survey; it is fairly involved. And I am always nervous about answering questions from my health insurance provider: more often than not, when I inform them of this problem or that — even those insignificant in the grand scheme of things — it results in a loss of coverage, increased cost, or additional steps I must complete to continue receiving the care that I do.

This nervousness comes, especially, from my time spent uninsurable on the individual market due to preexisting condition. When I was younger, I created and held steadfast to a very important rule with my own family: Information Equals Ammunition. In the insurance market, this rule is sadly just as applicable.

Every year, after taking the survey, my husband is informed that he is dangerously underweight and action needs to be taken to correct this state of being. My husband is 5′9″ tall and weighs around 120lbs. This is his natural state. He eats a healthy diet, he walks to work and back every day and gets a fair amount of exercise beside that. He inherited his very lanky body frame from his mother, who is even skinnier than he, and jokes that when she was pregnant she never actually gained weight; at the end of her pregnancies, she looked just like she does now, but with a basketball contained in her tum.

When my husband played football in high school, he was actively trying to gain weight both through diet and muscle-building exercise — and he plateaued at 140lbs. Now that he is not weight-lifting on a regular basis, he hovers around 120lb. This is a BMI of 17.7, barely more than I weighed when I was a teenager — the difference being that I was significantly undernourished, and he was more-than-properly-taken-care-of.

So once a year, he gets yelled at a bit about his weight. He is healthy in literally every other way, his one and only health concern being a minor bit of TMJ pain which he now has completely under control. But he does not fit the widely-understood able-bodied “norm,” and so Something Must Be Done!

I take the same survey, and of course I am provided with tips for stress reduction and admonishment to see a pain specialist. I am now very slightly overweight, so of course I am also admonished to “park further away!” and “take the steps instead of the elevator!”

Recently, I have been receiving messages on our home phone from our insurance company, encouraging me to call them for the opportunity to participate in an unnamed program, for unnamed rewards. These messages piss me off, so I ignore them, even though I know there is a strong possibility that it might mean our premiums would go up. I planned to contact them at some point or another, but it was not high on my list of priorities, and still they kept calling every other day.

Then I received a letter, in a tone that can only be described as a lament, that I had not responded and would I please pretty please call them, this time finally informing me that it was for their “Healthy Back Program.” Oh great, I thought. And I caved in and called.

The woman who answered gave me the spiel I expected. And my reply, in a sweet voice, was (closely paraphrased): “Yes, I have chronic pain from fibromyalgia and endometriosis,” and she replied with a somewhat disappointed “Oh” — but I interrupted to continue: “I went in last year for lower back pain, and I spent the entire year going through various programs and treatments to help it. I had to go under for a laparoscopy which led to being diagnosed with endometriosis, and I’ve now been through physical therapy and even have a personal TENS unit to address the pain.”

“Well, unfortunately that means you are not eligible for our program, because your pain is chronic…”

Mm-hm. I am sure you can hear my disappointment.

This is the same health insurance company which paid for all these tests and treatments and has on record exactly what my condition is, what the background is, what medications I am on and which treatments I am partaking in. I provided this information in the health survey. It is very clear that I have chronic pain conditions. But because I even mentioned low back pain — a common focal point for people who like to cry about “overdiagnosis” and “overtreatment” — I was immediately flagged and referred to this oh-so-special program.

It’s just one more little thing I have to fend off to be able to continue on my treatment course. Just like every time I visit a new doctor, counselor or other practitioner and have to patiently go over every disclaimer about why I am on this Vicodin and why I have this symptom and why this and why that, and that yes I am being closely monitored by competent doctors and am following my treatment course as prescribed would you please leave me the fuck alone so we can get on with things.

And it’s exhausting, always having to be at-the-ready to explain these things. It’s just exhausting in a way that no able-normative person will ever fully understand, period, and I am confident in asserting this. It just drains you, even though each of these encounters is small and relatively easy when considered individually. But it accumulates, it weighs on you, and the knowledge that you always have more to come — that is the worst of it.

This is what people with disabilities go through in a health-obsessed culture, a culture that sees personal health as a responsibility to the collective, and any person who in any way deviates from the designated health “norm” (which changes regularly and is not as science-and-reason-based as these people like to think) is failing their family, community and nation, that they are dragging them down — being a burden.

And we all know what the result is when disability, or any health abnormality, is constructed as a burden.

In honor of 4:20; fashionably late.

It is a given that, when there is cause to mention my fibromyalgia to anyone who did not formerly know of it, there is a high probability that a person will “helpfully” “suggest” some miracle treatment they’ve heard about, or know someone who knows someone who’s tried, etc. Honestly, you get all kinds of suggestions, from warm water pool therapy to probiotics to eliminating aspartame from your diet to … yes, my friends, pot.

Marijuana has been shown to have analgesic properties, you know! There’s no way a chronic pain patient has ever heard of that before! (Honestly, I think  these sorts of pot evangelists latch on to the idea of someone they know who might need pot for a medical purpose! because it legitimizes their own use in their minds. But that’s not what I wanted to write about.) Anyway…

I’ve never smoked pot. Or tobacco. Not one sip of alcohol has ever passed my lips. I’ve never tried any of the recreational drugs that are so popular on college campuses.

Make no mistake: I take drugs. Oh, do I ever! But I take them by necessity. I do not take them for fun. I would rather not have to swallow 14 pills/day (minimum) to be able to function on a basic level. Honestly, I hate taking most of them. A couple of them, fortunately, offer significant benefit with no downside beside the price tag. But others have unpleasant side effects and addictive properties. I have a long-time love/hate relationship with Vicodin in particular (pros: allows me to get out of my bed/chair and do things; cons: digestive issues, artificial mood high/”manic” phases, problems with focusing and retaining information, problems relaxing, probability of developing a tolerance a.k.a. dependence*). While there are incredible benefits in taking these drugs, there are also considerable downsides that can’t be ignored.

So the last fucking thing I want to do? Is take more drugs. For the hell of it. I take more than enough medication that I fucking hate taking, for reasons too varied to fit in one blog post. I have a fucking awful relationship with taking medicine. Me and taking medicine don’t get along, yo. I don’t think about it on a daily basis, but it’s sitting there under the surface every time I pop those pills in my mouth. I don’t think it’s something any fully healthy person can ever understand that inner conflict. And y’all know I will stand up to anyone who tries to judge me for taking this shit. I would not be where I am in life right now if I did not have all these drugs to rely on. But that doesn’t mean I’m totally ok with taking them.

That means I have zero interest in taking any drugs for any reason other than it will help me do more than I can do right now. (And even then, I’m not terribly excited about it.) Especially when those drugs could have serious and potentially fatal interactions with the drugs I’m already taking.

This is not a judgment on anyone who does use those drugs: the social drinker, the recreational marijuana user, even the beleaguered cigarette smoker. There are real downsides to every drug, but that does not erase that they can be enjoyable and beneficial for folks who use them responsibly. And this is yet another time to emphasize that a person can, in fact, hold two ideas in one’s head at the same time: I can vehemently reject recreational drugs for myself while being perfectly content with my friends smoking a bowl or heading out for a drink. I make no judgment, moral, character or otherwise, on recreational users. The only judgment I make is on my life and my needs.

Here is the thing about these “suggestions”: they’re not just unhelpful; they’re insulting. They rest on the assumption that there’s no way I could have a basic understanding of my own body, that there’s no way I’ve ever heard of this treatment before, that there’s no way I could have tried it already, that there’s no way it could be a bad choice for me individually for any of a million different reasons. This is not what’s running through a person’s mind as they make this suggestion, but if that person stopped to think for half a second, and reflected on these assumptions, they would most likely decide against making the suggestion. Because there is no way that a person could recognize my individual humanity — recognize that I have my own individual body which has its own ways of working and its own needs and its own history — and still make that suggestion.

Consider, for example, my family background, which is a major factor in my decision to stay far away from pot and alcohol. My three siblings were a generation older than I, old enough to have children who were the same age as me. (My oldest brother is in his 50s. I’m 23.) My sister lived sixteen hours away in northern Oregon; my two brothers lived in town, and I spent a good amount of time with them (including several years actually living in their respective homes as one brother was going through jail).

My entire immediate family is mentally ill. Both brothers have been diagnosed with schizophrenia with psychotic episodes. My mother fits every criterion for borderline personality disorder, though she has never seen a mental health professional in her life, and the suggestion that she might need to would be met with accusations of a conspiracy to run her out of town. (This is not an embellishment; it was a regular pattern throughout my childhood.) One brother and my sister have bipolar disorder. And all four (my mother, sister and two brothers) suffer clinical depression and anxiety to varying degrees. My sister is the only one to seek any treatment, and even then only intermittently.

And I’m sure you can guess where this is going.

My brothers drank. Casually, throughout the day, totaling at least a six-pack each on a normal day, for awhile. It went up and down throughout my childhood, and once in awhile one brother or t’other would swear off the stuff, declare himself clean, but be back to it a month later. And yeah, you know, anyone drinks that level, they’re going to get drunk. But my brothers didn’t just “get drunk.” They got… well… crazy. The worst incidents I can remember as a kid always involved alcohol. Severe paranoia, apparent hallucinations, imagining things that didn’t fit in reality at all. Psychotic episodes. Several times, they were targeted at me, as young as six and continuing into early adulthood. I was never physically assaulted, fortunately, but I can’t exactly say I was unaffected.

Given my experiences as a child, suffice to say, I don’t want anyfuckingthing to do with alcohol.

And, of course, marijuana can exacerbate schizophrenia. (Please, please take note of the word exacerbate, not create, and don’t lecture me in comments.) Um, severely.

And I am keenly aware of my relation to these four people — immediate relation — and the severity of their conditions. (It waxes and wanes, over the years, as any condition does, but it is quite severe during the bad times.) And I am also keenly aware of the tendency of these two drugs to tap into a predisposition to these conditions. And, though I seem to be ok so far (getting away with “mere” anxiety disorder), I’m not going to make the mistake of assuming I’d be any different. Schizophrenia, in particular, tends to lie dormant in women until their twenties and early thirties. And I have to live with that hanging over my head (and my husband’s) for some time yet.

Given all that, do I want anything to do with pot? Well. No.

Do you think any of that flashed through the mind of my eager acquaintance when they decided that all I might need is a small toke? I don’t think so.

That’s my individual story. I’m one person. I don’t know what the hell is going on in the life of the next chronic pain patient you might meet. That’s the point. You just don’t know. You don’t have the slightest concept of what their background is or how their body works or what they’ve tried before. So why do you assume it’s totally benign to throw this in their face? Why are you acting as though you know their body, their history, their experiences better than they do?

Do I have the time to detail everything above every time somone “helpfully” informs me that marijuana can be good for pain relief? Should I have to reveal all this stuff to total strangers, or even acquaintances, coworkers, casual friends? Even if all this stuff wasn’t there, and I just didn’t feel like using it: why can’t I have that decision respected?

Drugs are not, and never will be, an enjoyable experience for me. They are a necessary… well, not evil, but certainly not altogether positive. Either way, they are a necessity for me to be able to live the life I want to live: to be able to do the normal things most people take for granted. You know what doesn’t feel like a nice, relaxing escape for me? Yeah, I’ll let you answer that for yourself.

Bottom line: Respect every person’s sovereignty, every person’s ultimate control over their own life. We’d all appreciate it.

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* Repeat after me: De-pen-dence. Not “addiction.” Physiologically, the two can be identical. But a person is addicted when they have no need for the drug; they are dependent when there is a need for the drug for medical reasons.

The specter of “addiction” is weilded against pain patients — acute and chronic — and make no mistake: anyone who speaks threateningly of “addiction,” when you are in real pain, doesn’t have the faintest understanding of the interesctions between substance abuse and chronic/acute pain treatment. Dependence is a real issue in pain patients, and as such, they must be monitored closely by a medical professional who knows wth they’re taking about. But the possibility of dependence does not automatically exclude controlled substances from the list of possible treatments. It is one of many issues which must be handled with care and nuance; the possibility of dependence should inform the decision, not make it. Each individual patient will have to make decisions with hir MP based on all the factors in play, including what type of pain (which can change which drugs are in play), how severe, how long it is expected to last, the patient’s physical and mental condition(s), interactions with other drugs, how certain drugs have worked (or not) on the patient in the past, and so forth. Anyone who automatically skips that conversation to get into scare tactics and character insinuations about addiction is not worth the trees that were killed to make fancy sealed papers hanging on their office wall.

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Addendum: This post took me a good four days to complete. It’s a very deeply personal subject to me. It is definitely scattered, definitely defensive in tone. But I don’t feel I have the energy to rework it to be more coherent without also destroying the heart of it. I meant to get across the insult and violation of privacy I feel when someone lobs the pot “suggestion” at me, to continue exploring how these “suggestions” affect people with disabilities and chronic illness, to make clear why no, not all things are good for all people, and that right to refuse, that sovereignty, must be respected. I do feel I must add that intellectually, I know that there is nothing “wrong” with taking prescription (or any) drugs, but unfortunately it’s not so easy to accept that emotionally (much how the fat-accepting person still has trouble with body-negative thoughts). But my decision to stay away from recreational drugs is, well, fraught, and I don’t think a lot of people understand that — understand how using drugs can be so exceptionally not fun for somebody who has to rely on drugs to be able to brush hir teeth and get dressed most days, much less anything more involved than that. So: it is definitely a “brain fog warning” post, definitely a harsh tone, but it came directly from the heart, so it stays as it is.