Tag Archives: life

Twice in one day

Do you ever have one of those days where you just want to shake a fist in the universe’s general direction?

A few weeks ago, I had the fairly weird experience of two different people trying to make the fact that I use a cane a topic of conversation (?) on the same day. Usually, when people feel the need to point out the obvious to me — that I use a cane as a mobility aid due to chronic pain — it happens pretty infrequently, maybe once a month. Twice in the same day, though, just felt strange.

Incident one: As I am waiting for the elevator in a building on my university campus, a young woman approaches me and asks me why I use a cane. She’s curious about it, she mentions, because her mom uses one. I reply that I use it because I have chronic pain, and this seems to satisfy her curiosity. I feel oddly relieved when the conversation stops there.

Incident two: I am walking to a coffee shop, and I pass a row of garbage and recycling containers out on the sidewalk on a busy street. A guy rummaging through one of the containers picks that exact moment to look up; he sees me and yells out, “You’re a YOUNG DISABLED LADY!” I am too confused to respond, and keep walking.

I can hear the refrains now: Those people were just trying to be friendly! They didn’t mean anything by it! They were just trying to start a conversation!

Maybe, but that doesn’t stop having the fact that I move differently from most other people pointed out to me in a very obvious manner (as if I don’t already know that, what with using a cane and all) from being annoying as all get-out.

So, the next time you see a person who uses a mobility aid, service animal, or other assistive technology, please remember: If you have the urge to point it out to them and/or try to use it as a conversational springboard, chances are that you probably do not have to do this. We know that we use assistive devices, and that said devices may look odd to people who are not disabled. It’s cool. We totally get it. And, even if you don’t “mean anything by it” by pointing it out to us or trying to tell us about someone you know who also has a disability, we might read your enthusiasm as something else entirely.

Teeny Little Super-Meta: The things I can’t write about

And they say that the truth will set you free/but then/so will a lie

— Ani DiFranco, “Promised Land” (2003)

Yesterday, I wrote some things down, intending to use them for a post. The half-post or so that I wrote was inspired by, in large part, bullying-related suicides recently making the national news. It was difficult to write, as much of it was stuff I have kept to myself for a while — both for the sake of those I care about, and for my own mental health.

After I finished writing, I realized that I could not use any of it. Because the thought of  exposing this stuff to an audience was, and is, too painful. I want to believe that writing it down helped me in some way, because otherwise what I wrote exists as just a barely-legible scattering of meaningless words, scrawled on a piece of paper.

There are many things that I can’t write about here on FWD, or on my personal blog. Many of the things that I have experienced are so emotionally fraught that I am reluctant to even consider writing about them, mostly for fear of going into a black hole of emotions from which I may not be able to get out.

There are other reasons, too, such as protecting the people that I care about in any public retelling and/or analysis of these events. Some of these people may not have heard every part of the story, or even every story. There are also people — many of whom have a central role in these painful stories — about whom I do not care, and I would relish the opportunity to textually rip some of these people apart. It would be easy to say, “They ripped me to shreds, and now I will grate them like cheese, using my keyboard. It is payback time.”  Paradoxically, my own selfish concerns about my integrity prevents me from using my keyboard as a weapon.

The twist, of course, is that writing about these things in the “right” way — dispassionately, analytically — might help someone. Posting about things that are painful for me to think about, let alone write about, might reassure someone going through similar issues that they are not the only person who has dealt with some scary things.

And, like many people, I like the idea of helping someone get through rough times, or reassuring someone or someones that they are not alone in facing trying circumstances. Maybe that’s selfish. Maybe it’s part of human nature. Maybe it’s both.

Writing publicly about these things, on the other hand, may get me comments that I do not particularly want to face. This could not have happened. How do we know you’re not just making this up? Do you always have to write about yourself? Let’s look at this objectively. Why can’t you focus on something more important? I’m sure they didn’t mean it like that. Why can’t you just let it go? It was so long ago, anyway. We all have difficulties, what makes you so special? Who do you think you are?

According to the dichotomy of writing for an audience, I should either “get over it” and write about x or y more important topic, or excavate all of these painful things — that is, come forward with them publicly, dissect these less-than-savory experiences and my role(s) in them like a vivisected frog laden with pins to keep it from slipping out of the pan — in order to help others.

I think this dichotomy is bullshit.

But, the main thing is:  Very often, I cannot tell the whole story, for highly specific and extremely personal reasons. I might, in time, choose to reveal parts of these stories. I certainly do not have an obligation to do it all right now.

[Note: The title of this post was partially inspired by Sesame Street’s Teeny Little Super Guy short segments.]

Only you know your own experience

A few days ago, I had a conversation with a medical professional that went something like this:

MP: So you’ve been feeling tired?
Chally: Yes, not as tired as I have been, but still pretty tired. I’ve been waking up at 5am1. Not this weekend though.
MP: Why? Are you depressed?
C: No, I’m not. I’m not sure why that keeps happening.
MP: You don’t seem like you’re depressed. So do you have recurring thoughts when you wake up?
C: No. I just wake up, then I log on to the computer and check my emails to see what came in overnight. Do you think it could be the sunlight waking me up?
MP: No, the sun isn’t up that early. Do you have to check your emails?
C: No, I just do. I don’t want to leave the room and wake the household, so I just stay there and check my emails.
MP: So is it a compulsion?
C: No, I don’t have to check my emails, I just do it because I want to and that’s what’s there to do. It’s not a compulsion.
MP: Do you wash your hands a lot? Do you have lots of recurring thoughts?
C: No. I don’t have any symptoms of OCD.

That last moved the conversation on quickly.

I’m telling you this story so you know something very important. Medical professionals are people, with their own biases and experiences. Sometimes they will make mistakes and the wrong judgments. They will try to fit you into convenient boxes, tell you things about yourself that just aren’t true. Your trust isn’t always well placed when placed in authority. Remember that doctors aren’t the sole arbiters of experience. At the end of the day, only you know what’s going on for you; your experience of what you’re going through is valid.

  1. As I’m writing this, my body has happily decided to switch to 7-7.30am. Which is both good and ?!?!

The Cult of Busy: Introductory Thoughts

The first time I noticed the correlation between “busy” and “important” was when a friend of mine boasted of her first “cardiac incident” at the age of 27. She was a very important person, after all. So important that she had to be on call 24 hours a day for her workplace, had to arrange everything around the schedule of her workplace, and rushed back to work after being released from the hospital, in case anything had happened that needed only her to fix. 1

Since I judge my worth the same way, I don’t really blame her. The Cult of Busy tells us that worthwhile people have full daytimers, with every minute packed. Want to do lunch with friends? I’ll have to plan that week in advance. Coffee date? Only if I can fit it in between my full-time job and my hours of volunteering. And I simply can’t agree to anything else right now, have I told you how busy and overwhelmed I am with all my important things to do?

There are things I think are wrong with this pace of life for everyone (including me, but as I said, I totally buy into it), but it’s especially difficult when it comes to people with disabilities. When you value someone’s worth as a human being on how much they can squeeze into a day, what value do you place on someone who cannot do all of that? And what value do you place on people who attempt to do enough to keep up with everyone else, but fail?

We value certain things in Western Society, and one of those things is How Important You Are, and how we judge that importance is how busy you are – how in demand you are – how many people want to know what you have to say.

One of the ways this manifests is around Work (by which I mean paid labour outside of the home – the issues of unpaid labour within the home are a bit different, and we all know that unpaid homemaking is very undervalued, and people have some odd ideas about home offices and small business run out of them, and then we get into volunteering and– well, I mean paid labour outside the home for now). “What do you do?” means “What is your job?”, and if you can’t work full-time because of a disability, well. Well. That’s so sad. What do you do all day, after all? (How important can you be? What will I talk to you about if I can’t talk to you about your job? Gosh, you must be lazy. It must be nice to sit around all day!)

And then things get internalized. “I don’t have a job. I’m not contributing. I’m not important. I better make myself small and inoffensive in some way so that no one thinks I’m a burden. I don’t really have a lot of worth as a person because I’m not contributing.”

The Cult of Busy reinforces a lot of abliest ideas about who is important, and who is not, which means that the people with disabilities who can’t do It All (whatever It All is) are by default not important. They don’t count. They don’t need to be considered in how you build a business, say, because they’re never going to work for you and never going to spend money there because they aren’t important. They’re not worth including in your campaign about social justice issues because they don’t work so they don’t really contribute and even if they did, no one cares about what they have to say anyway because they aren’t important. If they were important, they’d be Busy. And Busy means something very specific: As many hours of the day filled with Stuff To Do as possible.

I want to write a lot about the Cult of Busy, in a variety of ways. How The Cult of Busy feeds into the idea that people who work less than 40 (or 60 or 80) hours a week are “getting away with something” and “not actually committed to their jobs”. How if you’re not working you “should” be volunteering, because otherwise you’re doing “nothing” with your day. How we disdain people who “just sit around all day”. How people like me end up confusing “busy” with “important and meaningful” to the point where we make ourselves ill doing too many things and being torn in too many directions.

Be busy. Be more. Be better.

[Be exhausted. Be unwell. Be harmed.]

  1. This wasn’t actually true, just how she perceived things. When she was fired several months later and the place she worked at was better for it, she was the only one surprised.

Invisible Identities, Part 3: The Privileges and Pains of Passing

Previously:
Invisible Identities, Part 1: Invisible to Whom?
Invisible Identities, Part 2: The Default Human

Note:

I’m told that in the American context, when speaking about race, the term “passing” is most associated with black people due to a pretty loaded history. This is not the case where I live, simply because that’s not the history we have with the term. As such, when I speak of passing race-wise, I am not speaking only of light-skinned people of African descent who can do so. I realise that this post could therefore be a somewhat uncomfortable read for people in that context, and am putting up this note to therefore hopefully address some of that discomfort.

It’d probably be a good idea to read the previous posts in this series if you find anything else in my word use or context confusing, especially as many of the points in this post build on the previous posts.

Comments that say it’s wrong to try and pass, or conversely that someone ought to try and pass, will not be tolerated. Either way attempts to take away something of someone’s choice, experience, decision making. How one negotiates one’s own life, how one chooses to deal with all the oppressions on hir back, is hir business.

Being able to pass is a privilege. Passing privilege means that others don’t grab my body or assistive devices, people I’ve never met don’t look at me with pity or disgust and I am less likely to face intrusive and upsetting questions. Those are amazing privileges that many of my fellows in the disability community don’t share with me. Passing privilege means that I am not watched suspiciously in stores, negative comments are not made about my features, white people feel comfortable to interact with me and strangers do not expect me to act as an example of what all people of my background are like. Those are incredible privileges that many of my background do not share.

First up, we must address the nature of passing. Sometimes it is active (one chooses to pass) and sometimes passive (one is passed). Sometimes it’s an interaction of expectation and experience, habit and circumstance. One cannot untangle one’s own efforts to pass or to not from the point of the idea of passing. That is, whether one passes or not is dependant on the outside observer. The whole idea of passing hinges not on what the (non)passer does, but on the observer’s response to that person. There’s an extent to which one can control it – and people have developed quite some techniques – but it’s not always a matter of choice as to whether to pass or not.

There’s a friction between passing and solidarity with one’s group. Those who can pass as being a member of a dominant group may miss out on many experiences and forms of discrimination that are held to be facets of that group’s commonalities. One of the main problems with passing is that in doing so an inequitable system is being held up (by those who pass others, by those choosing to pass). This is to say that passing supports the idea that equality, better treatment, is gained by melting into the dominant group. This is of course true, as is evident in, for instance, shifting definitions of whiteness; but one shouldn’t have to lose their own identity to the “good,” dominant identity in order to be dealt with well. We should work not until identities disappear but until they’re all okay to have.

That burden should be placed on those making the assumptions of – enforcing – default identities, not on the passers. Passers frequently report hostility from within their own groups, and accusations of not really being a member of their community from all sides. No one is less a member of the group for other people’s perceptions and it’s incredibly offensive to suggest otherwise. Passing is not always a choice; when it is, it’s presumptuous to resent someone for that and just outright wrong where safety is involved. How one deals with one’s own experiences of oppression is one’s own concern.

Being able to pass really messes with my head. I’ve frequent bouts of intense guilt about it, and I feel sick when people in my communities admire me for the features that make me more likely to pass (‘look at her beautiful skin.’ Increasingly I need to get the nearest bathroom and scrub and scrub where they grab my arm). Sometimes I don’t feel quite real or as though I’m cheating, an intruder in someone else’s identity. With regard to being disabled, this has some nasty consequences: in the past I’ve not gotten needs met, either because I can’t bear to out myself or because someone doesn’t quite think I’m truthful. Passing doesn’t mean I’m not struggling to remain standing while we’re talking. I struggle with passing and being passed. Sometimes I try and do it to feel safer (never safe) and lose my integrity. Sometimes I am passed, and it’s a mix of delight and loss and damage. Whatever I do, it’s never enough, I’m never enough.

Now I just mostly let people think what they will. The glowing effects largely disappear once I give off too many cues. Because so much of my identity, experience and expression is tied up with those of my identities that are invisible, the effects are frequently fleeting.

Being invisible doesn’t mean I face no discrimination but that I face less individualised discrimination in many contexts. Looking like I do has not prevented, upon the acknowledgement of my identity, looks of disgust, offensive remarks about my family, having to listen to racial hatred. It has not prevented the fear in me, the way I have not felt safe since I was a little girl. It has not prevented that I modify my dress, my speech, my movements, my stories in order to appear as “normal” as possible, just like anyone else trying to not face the wrath of whiteness. Attempting to invisibilise difference is hardly restricted to those of us who can pass.

The thing is, I’ve done everything. I’ve been loud and proud about my invisible identities. I’ve done my best to make them disappear. I’ve allowed myself to be passed, I’ve actively worked to pass. I’ve just been myself, I’ve made my identities explicit. At the end of all this anxiety and modification and thought and care, one thing remains constant: it’s the perceptions and actions of people in dominant bodies that count. When I pass, there’s still the weight of many manifestations of oppression on my shoulders. And irrespective of whether I pass or not, people outside of my groups still get to determine how I am treated and how I am perceived. There is no way to win.

[Cross-posted at Zero at the Bone and Feministe]

On writing about disability

That’s what scares me the most about talking about disability. It’s being reduced to someone who is so broken that they are capable of nothing. And that’s exactly why I mean to talk about it. Because, like the other stories I write, talking about disability is a way to reclaim that agency. To demand and demonstrate that my disability does not mean that I am reduced to damage.

mouthyb, in her guest post Learning to Write About Disability

In that grand blogular tradition of riffing off another blog post, I’m going to jump off from mouthyb’s post and dive into my own thoughts on writing about disability. I want to talk about some of the difficulties I have had in writing about my experiences of being disabled, specifically in starting off at FWD/Forward.

At the start of October, I was getting to a stage where I was getting tired from disability writing. Not tired of it, per se – there is always so much to say! – but tired from writing so much, exploring these thoughts, exposing what was in my head for the first time in my life. It was a lot like building up a muscle, I guess; the work’s hard and it’s hardest as you start off. There was a lot of chopping away at fears and examining internal constructions, some of which I’d set up to save myself from the world, and some of which the world had set up in me anyway. It was big and scary and a lot to cope with. I was going to take a break, maybe get back into exploring some other areas of oppressions and identity.

Then, of course, during a round of emailing one day amandaw threw out the idea for FWD/Forward, and I simply had to accept; I could not refuse to be a part of what would surely turn out to be a magnificent project, especially with all these great writers on board. So thought I’d go slowly, slowly, maybe use a few things I’d written previously, hope I’d get my mojo back, I could write through this. And I am so glad I did sign on.

I’m not sure how great an idea it is to write through a period in which one needs a break as a general rule. Writing, writing from within yourself, is hard and exhausting work, for me at any rate. It’s one of the toughest things I do with regularity, and also one of my favourite things in my life. In this instance at least, working that muscle has proved to be a positive exercise (heh). I found greater capacity to write in doing so (by pushing myself, because of the obligation I felt to contribute as much as I could to administering this site, maybe it was just what would have been there anyway). And I don’t know that that’s because I gained lots of passionate inspiration. I think it’s more because I must write. There’s the knowledge that as a disabled woman, I’m going to have to think about this stuff, and as a writer, I am compelled to express it, so I am doing what I must do. I can’t actually stop being a writer, and I can’t stop identifying, so I must work.

But of course, some things are painful to write about. There are some things I know I won’t write about in the foreseeable future. And with regard to pain of the physical kind, it was difficult to write through the great fatigue, brainfog and hurting hands I experienced for much of 2009 (hoping the worst ended with the year!!). So I try to negotiate as best I can what my body and brain need (rest, stillness) with what my mind and soul need (to explore, release).

But the worst of my learning to write about disability took place much earlier, when I spoke about it for the very first time early last year. Because there is a great deal of shame associated with disability. Society holds it something to be hidden away, denied. When it’s to be spoken about, the speaking must come from parents, carers and advocates, not the people concerned themselves. I had internalised a great deal of that shame.

I’m writing because I have things to say about disability, ableism, and my personal experiences. To me, it’s important to contradict those who tell us, ‘you can’t have experienced it like that. You’re lying, you’re mistaken, it’s not possible, that’s not how it goes.’ It’s important to ourselves mark out the issues that matter to us, lest others do it badly or not at all. It’s particularly important that we ourselves, who are so often denied our voices, so often silenced, tell these stories. So I am telling mine and doing my bit to support the voices of those like me.

Two things I have lost, three things I have gained

I can’t rely on my body to produce all the energy I want anymore, to do what I want anymore. I have to ration out time and energy and the capacity for certain things.

I no longer trust that people will stick by me when things get inconvenient, when being my friend gets messy; that I’ll get the support I need.

Those are two things I’ve lost.

I have a community. I don’t have to explain things to these people, I don’t have to get embarrassed, disabled people just get it. I belong a little more.

I have a framework to fit my experiences. It’s easier to not shame myself for not fitting someone else’s standard.

I’ve greater self-awareness. I have learned to respect my body and work to sustain it.

These are three things I’ve gained.

[Cross-posted at Zero at the Bone]

Depending on narcotics

IMG_0172I 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.