Annaham linked to her post on the connection between disability and the fat acceptance movement a little while back, and it’s a good read. What I have to say isn’t a direct response so much as a riff off the connection she brings up.

Consider, again, the phenomenon of invisible illness and the response of the general public to the knowledge that some acquaintance of theirs is disabled: a good many will accept it and offer their sympathies, and a good many will reject it (or at least be doubtful) and question the diagnosis. They know better, that person has to be faking it (or it’s all in their head), it can’t be true. They’re just lazy/freeloading/don’t want to work/welfare culture/etc. Even if these criticisms don’t make it off their tongues, they tumble around in their heads.

And those of us with invisible illnesses will, occasionally, have the good fortune of being able to observe these people voicing these thoughts to people they consider confidants. People who, they think, don’t suffer from and/or have close connection to someone with said illness. People who they think share their way of thinking. And usually, we’ll shut up and carry the knowledge with us that anybody who’s offering generic sympathies to our faces could be sneering at us behind our backs.

It has been my experience, being privy to some of these conversations (including my own brother’s admonitions to my fat and physically disabled mother), that the larger one’s waist size, the less likely people are to trust that they really do suffer whatever condition they claim to suffer.

Folks from the fat acceptance movement will surely be familiar with the underlying attitude. It’s a lack of self-control, or a reckless disregard for one’s health (rather, for societal expectations, but no one will outright say that) or an overarching irresponsibility. It’s a fundamental immorality that makes you fat, they say (though rarely in those words).

They see a connection here. If someone is too lazy to “just” spend an hour at the gym every day and deny themselves any and all pleasure in their diet, then—[insert forehead smack]—of course they’ll be too lazy to get off their ass and get a paying job! Or maybe it’s the other way around. Anyway. They take away from my viewing pleasure as I move through the world and then they take away my hard-earned tax money! Damn freeloaders!

Indeed, fat people probably experience a declining lack of trust in their own description of their experiences the less trim they are. And I’m sure this whole deal is compounded further for mental illness.

It just struck me as I was rereading Annaham’s post. It’s damaging and frustrating for fat folks and the disabled both, and difficult to combat at that—especially if you try to speak up, given that the original speaker just spent the first half of the conversation discrediting the opinion and experiences of you or anyone like you. It leaves one, in the end, feeling very small and helpless. Which is something both groups feel often enough already.

Beyond awesome:

Thanks to Annaham.

I’ll note that “Have you tried XYZ? My mother-in-law’s second cousin’s neighbor tried it and was like totally cured!” (usually a dietary supplement or one of the many other placebo treatments packaged and marketed to the suffering—and this is not meant as a criticism of alternative therapy in general, because some of it has proven actually effective) is another way to get me pissy rather quick. It’s hard to let these people down without using the word “bullshit,” which they’re probably not going to take well to, and after all, they are well-meaning. But well-meaning does not forgive all wrongs.

Let’s make things simple. Anyone claiming to be able to cure you? Is probably scamming you. In fact I’m completely confident I could remove the word “probably” from the preceding sentence, but I try to be generous. I know a lot of people have legitimate beefs with the medical industry and grow understandably disillusioned, but in general, if a treatment can’t stand up to the scientific method we all learned in the fourth grade, it’s bullshit. Sorry to be blunt, but there it is.

To take a different (and somewhat blunter) tack: I’ve been living with this illness my entire life. Trust me, I’ve had plenty of time to do the research, and I’m pretty familiar with the range of treatments available. I’ve tried a good many of them. And a good many of them do work on a lot of people, but didn’t work on me. I’ve figured out, so far, what does work on me. So thank you for your suggestion, but in the future, consider allowing me the trust and respect of considering that maybe, being someone who’s lived with the disease for over twenty years, I have a bit more knowledge on it than you, someone who’s only connected by degree, do, and a better handle on how to deal with it. Thanks.

Wait, what?

BARKING MAD….The Nation provides a pithy explanation of why Ron Paul is a lunatic who shouldn’t be allowed within a thousand yards of the White House:

Look at those policy positions! Abolish the IRS and Federal Reserve; balance the budget; go back to the gold standard; pull out of the U.N. and NATO;….fence the borders; deport illegals; stop lecturing foreign governments about human rights; let the Middle East go hang. What’s not to like? [emphasis mine—aw]

Wait. Did I say The Nation? Sorry. Actually, that was John Derbyshire writing in National Review about why Ron Paul would be absolutely brilliant as president of the United States.

I thought we were supposed to be in Iraq because we cared about the plight of those poor Iraqis under Sadaam Hussein and hey, how can you call yourself a feminist if y’ won’t go to war f’r them oppressed wimminz o’er there?

Oh. Right.

I realized in my “Who hates to hear they look great?” post I kind of reduced eating disorders to feelings of hunger (or lack thereof). I know this is not what an eating disorder is (I’d've been more accurate, I think, to speak of body image and control issues—saying an eating disorder is about hunger might be like saying sexual assault is about attraction) and I wanted to apologize for it.

So much for those conversational landmines, eh? :)

Lauredhel for the link! Hoyden About Town is one of those blogs I’ve been stalking but hadn’t added to the links list yet. Consider it done.

Windows Live Writer’s spell check doesn’t know what to do with the word “fuck.”

So I am on painkillers. This sort of happens when you have a chronic pain disorder.

I have to work for these painkillers. The medical industry is trying to crack down on junkies and traffickers getting ahold of these oh-so-sought-after pills. (I would gladly do without ‘em if I could, personally.) No doctor wants to be the one caught up in a story as a supplier to someone who then used those drugs in some sort of illicit manner.

My old rheumatologist was Dr. Silver in Beverly Hills. His office watched me grow up. My mother went to his office partner for her specialist visits and as a single mother, she scheduled the appointments when she could take me along (it was a four hour drive—the rheumatologists in the area were seriously that behind on the times, it was worth every minute of that painful drive). He was a great doctor all around, without doubt the best I’ve ever been to (and I’ve been to plenty). He trusted me. The one time he had to bring me into his office to be able to renew my prescription, he made it clear to me (as I stuttered that I was only averaging one a day and that should hopefully go down soon and…) that he already knew I was using them responsibly and he had zero worries about me, he just had auditors on his back and had to comply with policy. Which was fine with me.

I’ve found the same policy now that I’ve moved a country away from Dr. Silver and that’s fine with me. It was frustrating the first time I was refused a refill with zero notice and had to rush into the doctor’s office if I wanted to be able to make it to work later that week, but I understood the impetus behind the policy.

Well, that office visit was two months ago, and I was promised that I would only need to be seen for this purpose every six months. But just today I called to check on the status of my refill—I’m down to three pills—and the pharmacy informed me that the doctor’s office refused it because I needed to be seen. No further instruction.

ARGH!

This might not be so bad if I didn’t have to be in contact with my doctor for damn near every prescription refill I ask for! I take five prescription medications and they all need to be refilled once a month (or thereabouts, as with the as-neededs like hydrocodone and cyclobenzaprine). Something always comes up. I have been fighting constantly with my insurance and my doctor’s office ever since I became eligible for Medicare this February.

They refused my anti-anxiety medication—the medication that damn near cures my anxiety, which has caused me to become something of a hermit multiple times in my life, and which has zero side effects—because it was too new and expensive, and insisted on trying me on a couple cheaper pills first. Not only did they not work but I got to deal with boat-rocking nausea on the first and a bland depression on the second. Over the course of four or five months I was calling into the doctor’s office and the insurance company constantly trying to get things sorted out.

And that’s one thing you learn when you’re sick. Those people? Aren’t going to sort it out for you. It’s a constant struggle, a constant fight. If they make a mistake they’re not going to inform you of it and try to fix it, they’re just going to drop the ball. And if you don’t push them to do it (sometime this year, please?) they’re going to drop the ball.

I am a pain in the ass to my doctor’s office, I’m sure, but I sure as fuck don’t want to be. I would be SO happy to be able to leave these ladies the hell alone. But I can’t. Because unless I want to sit on my ass in pain for a month before they get around to writing up that letter to the insurance company, or that referral to the specialist, or faxing my refill request back to the pharmacy so I can get the medication I was already approved for, I’m going to have to call them and ask them to do it.

I ask. Politely. Always. The receptionists and nurses and other office staff snap back at me 90% of the time. I know their jobs are stressful. But damn. I am not calling in just to make your day a little bit harder. I’m calling because I have a migraine coming on and I need the painkillers before it comes full blast because then I won’t be able to drive the mile to the pharmacy to pick them up and guess what, it doesn’t just go away without those painkillers. I’m calling because I’ve been off my anti-anxiety medication for three months and I’m shaking and always fighting the impulse to bury myself in a corner and I can hardly bring myself to read my email spam because it’s too much interaction for me to handle, and I really want to get back on my old one that worked now PLEASE, and to do so I need you guys to get your paperwork done.

I give them time. I can’t solve the current dilemma until tomorrow morning because I waited until after business hours today, Monday, to call my pharmacy to give the doctor’s office plenty of time to handle the refill request I put in last Friday. I always give them several days after they told me it would be done before calling and reminding them to take care of this paperwork or that.

I am not pushy. I am not rude. I do not ask them to fly to the moon for me. I ask them to do their job, because my quality of life depends on it.

I am tired of this dance. Tired of it. I had a bit of an angry strain in my voice when I explained the situation to my husband after hanging up with the pharmacy. He got defensive and asked me why I was getting all angry, it’s no big deal. No fucking big deal? He is normally very sweet and understanding. But he can’t understand everything. No one can, until they’ve started dealing with it themselves. And then they get very sick of it very fast.

I’m just so tired. Why can’t I just get my damn prescriptions refilled on time? When I give them plenty of time? I need these medications. They’re two pain medications (Lyrica, which according to a biologist friend of mine does not work on people who do not have neuropathic pain so thank you I am not making it all up, and the hydrocodone), a muscle relaxant, birth control and my anti-anxiety. I do need them, believe it or not. My getting out of bed in the morning, and hopefully doing something other than sitting on my ass all day, depends on it. It would be nice if I did not have to do the telephone-go-round every time I sent in a refill request, walked in two days later expecting it to be refilled and found out the insurance company is stalling or refused it or my doctor needs to see me or or or or or. Damn ors. I wish they would leave me alone.

This weekend, Nicholas Beaudrot on Ezra Klein linked to this eleven-year-old Atlantic article, Why Americans Hate The Media. It’s a good seven pages long but Fallows effectively makes his point: the media cares more about the game of politics than the issues being batted around. They report endlessly on the political fights and how it affects the politicians’ careers rather than actually examining how the issues the politicians are at least deigning to discuss will affect people on the ground.

Back here in 2007, we see the same issues playing out in real time. There’s been a media fuss over the fight between Barack Obama and Hillary Clinton over remarks on the YouTube Democratic debates. We readers are only let in on the actual substance of the debate as a way to bring us up to date on who is “winning.” But how does this fight tell us how each candidate will handle the presidency? What does it tell us about how our foreign policy will be conducted? How the world will change as a result of the candidate’s governance? And beyond that, do the policies advocated by each candidate indicate any larger philosophies that will affect how they govern domestically? That will prove to have a real impact on the common citizen’s everyday life? What would that impact be?

No: we’re only told which candidate is ”winning” the game.

It’s left to bloggers to dissect what the game means. The media is obsessing over the trajectory of the ball—while the rest of us are trying to figure out whose window is going to get smashed.

I’m adding a link to my blogroll, but I wanted to bring attention to it here. I’m sure this site has made its rounds in the past, but I think it’s an invaluable idea and I want as many women to see it as possible. That site is The Shape of a Mother—it shows what real mothers look like before, during and after pregnancy. It is definitely NSFW as they are not afraid to include nudity, but really, that’s the beauty of the site. You get to see all the blemishes and imperfections un-re-touched, but at the same time you see just how wondrous they are and how beautiful the human body is. Pass it on.

Over half of the chronically ill*:

In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is “But you look so good!”

“Although telling someone they look good is often seen as a compliment,” says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week “it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”

Absolutely.

This is a sore spot for many with “invisible” conditions: that is, disabilities or impairments that aren’t visible to the eye, that don’t cause outward physical deformities or leave other telltale signs. The icon of the disabled in our society is a stick figure in a wheelchair; many healthy folks don’t realize that a good many of the people milling around them, though appearing outwardly healthy, can be suffering a chronic illness that leaves them impaired or outright disabled.

These illnesses can range from diabetes to chronic fatigue syndrome to cancer to eating disorders.

And because they are invisible, they can be harder to understand. People can’t see what’s wrong with you, so they assume there isn’t anything wrong (and we’re back to that white male able-bodied heterosexual default “person” again). Even presented with evidence, many people still insist that there can’t be anything really wrong. As people who have battled depression surely find familiar, you’re expected to just get out and get some sun, go out with friends, or otherwise push through. Most of us, after all, have experienced periods of sadness, pain or fatigue, or times when we were excessively hard on ourselves over our physical appearance—and healthy people will be able to recover from these things and move on. They have little concept of living with these things every minute of every day for the rest of your life.

And of course, no one can be expected to fully understand. But there are certainly conversational landmines that even the most well-meaning and sympathetic person can inadvertently step on. “You look great!” is one of them. Naturally, everyone loves a compliment (although many, especially women, are trained to feel a need to debate or deny those comments so as not to seem unduly self-confident). But when these compliments are offered as a refutation to a person’s complaints that they are feeling down or tired or overwhelmed, it leaves a person feeling (recall that teenage angst) that they aren’t really understood.

I’ll grant that I don’t tend to mind these comments as much; they blow over me a bit more easily. But a couple more comments that the committee picked out tend to dig under my skin:

* “If you stopped thinking about it and went back to work…” (12.42%)

ARGH!

I’ve been told to “think positive” my way out of the pain countless times. I have news for these people. I thought-positived my way through my entire first nineteen years of life. Despite living with a pain processing disorder that can make carrying in a few grocery bags feel like running a marathon, I pushed my way through school on nothing but Tylenol. And then I very nearly failed out of high school because I overworked myself. I was out of school for so long that the attendance office started calling and leaving threatening messages that I needed to come back or… I would go back to school for half a day and then take off my three-days-without-a-doctor’s-note just recovering from those three and a half hours sitting in a chair, not even enough mental energy left to learn: just enough to be present.

I then pushed myself through college, thinking that if I could just keep at it I could be “normal.” After six weeks I had to drop all my classes; I was stuck in bed in too much pain to so much as microwave myself a Hot Pocket for lunch; I lived on a big pan of bread bedside until I was able to go back home. I was bedridden and then housebound for three months thereafter.

I learned to pace myself after that; I dropped down to twelve units when I was able to return to college, and then mid-semester had to drop half those just to be able to finish half my work in the remaining half. (One prof cut me slack and gave me an A based on the work that I did, the other didn’t and gave me a C- because though I did good work, I didn’t do enough work to earn the grade. I still can’t decide which approach affords me more dignity.) Then I dropped down to six units the next semester and wasn’t able to finish it out. The pain catches up to me.

Then, a year later, I started working. Ten hours a week. And after six months I had to quit. It was killing me. I couldn’t walk when I woke in the morning; it felt like daggers shooting through the floor into my feet with the slightest of weight. I was feeling the migraines coming back, and my painkiller use was shooting upward at a rate I was decidedly not comfortable with. And my bosses were jerks to boot (“I’m fifty years old, honey, I hurt too.” “…!!!! [splutter]“).

No. I can’t be normal. Even if I look like any other perfectly healthy twenty-one-year-old (albeit with somewhat darker circles under her somewhat baggier eyes). I have to pace myself. I can’t take any more than two showers a week (and showers-per-week is a good gauge of my health at the time; when it drops below one, I know I’m in trouble). I can’t get out of the house too much (the effort trying to make myself look half-presentable, even after I ditched the somewhat exacting patriarchy standards, is too much, and then I’m out of my comfort zone where I can sit, stand, lie how I need, when I need and where I need, have my medicine and a drink at hand and heating pads and pillows ever-ready). I can’t take on too many out-of-house commitments, if any, and it has to be a pretty flexible definition of “commitment” to boot. My husband works full time and I not at all, and he still does half the housework. I’ve learned to ask for help when I’m struggling instead of stubbornly insisting I can do it myself. Etc. I’ve had to accept all these things. It’s a heavy hit to your pride, trust me.

Which reminds me of the last one that bugs the shit out of me:

3. You’re so lucky to get to stay in bed all day.

Oh, honey. I’d give anything to trade you…

*(A side note: I find it frustrating that a good chunk of stories I receive on fibromyalgia are press releases, seeking to advertise a new “alternative” treatment or, in some other way, make money off those suffering. A good chunk of the rest is business stories talking about how a condition impacts corporate profits. The remainder are slice-of-life stories that often get the facts pathetically wrong. I’d say perhaps one out of every thirty or forty stories that come my way seem to approach the condition in a respectful and accurate tone. This, despite being a press release, was one of them.)