Disability and the Abuse-Enabling Ableism of the System

In my ankylosing spondylitis groups, it is downright depressing to hear how many ill women stay in abusive relationships to keep their abuser’s health insurance.

It is expensive to stay alive when your body is trying to kill you, even aside from the monthly costs of medication. (I have great health insurance, and I spend more than $200 a month on prescriptions to maintain physical stability as well as I can. Note that those are prescription costs, which don’t factor in the non-prescription items. Or the co-pays for visits to general practitioner, specialists, acupuncturist, therapist–and believe me, being chronically ill will mess with your head, so therapy is part of my medical treatment, when I can afford to go.)

The next question from folks: Why not go on disability? First, my own reaction to that is “ah, yes, so you can see us as lazy leeches on society when really all folks want to be able to do is live a decent life even when they can’t properly function.” The stigma goes deep. We internalize it.

And then there’s the inhumane process. To even think about applying for disability, you must first have been fully out of work for 6 months. And then, disability is largely denied and the rehearings take, on average, 2 years. Do you know a person who could afford this? If you make it, you then have to maneuver through Medicare to try and find a doctor and specialists again who are willing to accept you as a patient, and in the meantime, unless you’ve skipped meds every once in awhile to build up an emergency stash (not recommended and docs will drop you if they discover this), you are off meds, the disease free to do irreversible damage while the gears of bureaucracy grind ever so slowly. So you apply for disability, and the very application process itself makes you more disabled. The very act of asking for help puts you in danger. This, my friends, is structural ableism at work. And the chronically ill are already exhausted–imagine compounding it with this process and the exhaustive documentation required. And then the surprise–if you manage to save more than $2000, you lose your SSI (supplemental income, not SSDI which you pay into during your working years) benefits, because obviously you’re rich and able to function if you’ve managed some savings. An extra disabling factor (do less, don’t work), and a spirit crusher.

The stories are terrible.

Women stay with abusive husbands because of good insurance. Those men might break our bones, but our bones will definitely  deteriorate faster without our medication.

The elderly live with abusive or neglectful family because their other choice aside from Sharon’s pinching and smacking and medication-withholding is homelessness.

Some of us can’t stand the thought of having to resort to being destitute in order to apply for help that might or might not ever come, and so we tell ourselves that once the disease cripples us enough that we can’t work, we will just arrange our own deaths. (People will say they didn’t see it coming. Some of us plan this decades in advance, we just don’t share because it would scare people, they would send us for psych evaluation, we are “crazy” for even considering it. But the whisper network exists.)

People plan to take their own lives because there is no way to be chronically ill in our society and live a decent life with what ability we might have left. Please sit with this for a moment.

Lest you think this is happening in a small segment of society, I’d like to remind able people that just because you are not disabled does not mean you will never become disabled or devastated by illness. Most of us get diagnosed between 19 and 42 in the spondylitis community. It’s not limited to the spondy spoonie community, just in case you were feeling safe in your own life. Anyone at any time can be diagnosed with a disease, be hit by a bus, fall a bit too hard. My best friend, when we were in our early 20s, offered to divorce her husband so he could marry another friend who had been diagnosed with breast cancer. There was no laughter or elbowing of sides–the offer was made in earnest, and it was considered in deadly seriousness by all of them.

We know from an early age we are not protected and that we can be ruined by getting sick. And while people are hurt, and abused by people and the system, the politicians bicker, people debate over whether disabled lives are worth caring for, paying for. We are discussed as an ‘entitlement program,’ as though we lie on beds of silk, holding our hands out for more grapes and a gold-gilded wine glass. We want to be able to stay on the medications that keep us as functional as possible. When we can’t function, we want to know we are not going to be left on a mountainside. When we look forward, we don’t want to have to remember to keep the knives in the butcher block sharpened, or to remember to put directions to the high bridge somewhere we can find it once our memories go.

People turn up their noses at the diseased and disabled, so we hunker down to accept abuse at home.

Decision-makers are bickering, and we are dying.

Cover Your Mouth: Germs, Autoimmunity, and Why You’re Messing With Our Medication

Hi folks! Things have been crazy with work and travel and a few other things (posts on all of that soon, I promise), but I wanted to pop in an ado a little piece on getting sick. Not the chronic-illness sick that this blog is about (although yes, that too), but the catching of the various flus and colds and enteritis-es and other nasties that float around people. It’s on my mind because I’m currently home with the flu (or something suspiciously flu-like) despite having gotten my flu shot. Sad panda.

Many of my fellow spoonies will already know this, but newer members of the tribe may not, and our general-population friends may not understand about us catching regular illnesses. So I’m taking the liberty.

The immunosuppressed are already at risk of catching every-damn-thing, and it’s right there in the descriptor: our immune systems are suppressed (for our own good–in most cases, it’s our own immune systems working to kill us). So, we don’t have our magical antibacterial armor like the rest of folks–our germ-warriors are old, tired, and mostly retired and not looking for a part-time gig. The castle gates are open, if you will, and nary an archer in sight. Because of this, not only are we at risk to catch any bug making the rounds, we are generally harder-hit by said bugs. You probably know that the flu and similar illnesses are usually billed as extra dangerous for “the very old and the very young.” The immunosuppressed are the invisible unsaid addition to that group–we’re in danger because while healthy folks can get sick (we just catch it easier), healthy folks have responses that we don’t. While you have the flu and feel like hammered shit, we (like the very old and very young) are likely to end up in the hospital because of how hard it hits us. (Ask me about my adventures in the hospital and ICU during a bout of gastroenteritis–essentially, I got a stomach bug and instead o staying at home on the toilet, I almost died.) We’re also more likely to get secondary illnesses like pneumonia, because good times, am I right?

All of this makes sense, you’re probably nodding. Yes, yes, Captain Obvious, I get it, no immune system. What you may not know, though, is that when we get sick, many of us have to stop taking our regular medications. When patients get sick, most rheumatologists take us off of our biologics (injections like Enbrel, Cimzia, and Humira) and our methotrexate. It’s to help not completely nuke the immune system between the suppressants and the illness, but it’s problematic. The way biologics work, they have to build up in your system. (Think antidepressants, it’s similar.) So skipping a week ends up putting you behind, your immune system is trying to rally, which means it’s back to its old tricks of trying to murdalize you. Depending on what you have, your symptoms can flare again–it’s different for all of us, but for me it’s joint pain, stomach problems, and crazy fatigue. If, like me, you carry your symptoms even when your meds are working, it just means things get worse for the weeks you’re waiting to get back on track. And once you’re back on your meds, you have to wait for them to kick in again. Most folks know about the immune system part of us getting sick, but I imagine fewer are aware of the secondary effects of stopping our weekly immunosuppressants.

This is why I am so adamant about telling people to get vaccinated. First, of course, is to protect yourself and your kids from getting diseases y’all don’t need to suffer through. But the other side of it is herd immunity–the more people in the general population that make themselves immune and don’t carry disease, the more I and immunosuppressed folks like me are able to function in the world, come to your parties and funerals, come to work, and generally not die. It’s also why I’m positively rude in reminding people to cover their damn mouths when they go about airports coughing and sneezing as if it were a distance-spitting competition. (I can even do it in multiple languages – Cubre su tos!) First of all, don’t be gross. Second of all, your mother would smack you if she could see you out in public like that. Third of all, I don’t want your damn germs, please-and-thank-you.

I travel with a medical mask not because I’m pulling a Michael Jackson, but because being around so many people (and so many gross people, I swear) is dangerous for me. The added bonus is that people think I’m the one who’s catching, so I get some extra space. But really. Cover your mouths. And try to keep your kidlets from touching and licking everything in sight. You’re killing us.


On Pain, Knowing Thy Body, and Doctors Playing Dumb

We all talk about pain. I talk, I write. There are certainly people who write about it better than I.* It makes me sad when people tell me their stories and say, “But it’s nothing compared to what you go through.” Full stop, here, folks. Let me tell you my personal philosophy on pain. I do not think we can ever compare our pain to another’s. We can sympathize, and those of us with similar issues can empathize, but one of the things I’ve learned from being in pain is that I have no place to judge another’s. Pain is weird; something that doesn’t bother me will drive someone else insane, and vice versa. And there’s no good way to compare pain–think about the pain of a healing broken arm…imagine having that arm, that ache. And now imagine you also have a cold sore, and accidentally bash into something with your lip. ZING, suddenly you’re like “What broken arm, dude, I’m pretty sure both an Alien and a Predator are clashing on my face right now.” Pain, and pain. And then the later song of the broken arm with the high aria of the throbbing lip. And then you meet someone who just slid their hand into a banker’s box and sliced open every finger on manila folders. DEATH. DEATH PAIN.

We call all of it pain, but it comes in shades and flavors and degrees. When you tell me about your pain, I am not cataloging it against my own. I take your story of your pain, and I hold it, alone, on its own. Your nerve pathways are not mine, they are your own, and if you say that the sunburn felt like being flayed alive, I am sad and cringing and wishing you cool-aloe-and-cotton-sheet feeling. I promise.

You just learn your body, I think, in a different way, with chronic pain because it is always there. I lived in my head before I got sick, and still do to a large extent, but now there is always the sense of body. An undertone of pain. Like cicadas in my head and thrumming in my bones, in the background, if it’s at a 4. Or elevator music that you hum to but aren’t really paying attention to, if it’s at a 5. At 6, the unpleasant pressure of speaker feedback thrumming through bones, distracting. You learn to distinguish between kinds of pain happening simultaneously–with both fibromyalgia and spondylitis, this is both useful and not. Not, because it doesn’t really matter and it’s pain no matter what the cause is. (Everyone knows this at some level. It doesn’t MATTER what smashed my hand what matters is that the hand is SMASHED.) Useful because it lets me know which doctor I need to think about calling, and useful because it lets me know if there’s anything I can do to alleviate it.

So when I have pain that doesn’t fit into my fibro-body-knowing or my spondy-body-knowing, I pay a bit more attention because it isn’t something I’ve managed to turn into background noise. You should hear me cuss when I smash my toes into furniture or doorframes (seriously, why can’t I stop doing this?). I tend to get cold sores/fever blisters on my lip when I get sunburned, and those hurt like the dickens.  Taking an Enbrel injection while it’s still cold, because I didn’t let it come all the way to room temperature is like injecting liquid fire into myself.

When I fell while moving in early June this summer, I knew. First of all, I don’t bend that way. Second of all, my ankle didn’t hurt right away. It didn’t anything right away – it didn’t even ankle. It was like it went offline. Sorry, unplugged, power surge, need a minute, taking a powder. When the feeling came back an instant later, that sucker hurt. I could put weight on it, kindasorta, so Mom deemed it a bad sprain and made me ice it, raise it, stay off it, use my cane. Sprains are notoriously slow to heal, she said, so I waited three weeks to call the doctor. Surely, I thought, it should feel better by now, even a bit. I got sent to an overflow doc, got a quickie x-ray that he put up into the light, said “I don’t see anything, you’re fine” and sent me along. Limp, limp. Another month, then send an email to the usual primary care doc, who says “You have both a joint disease *and* fibromyalgia, of course it still hurts. Sprain. Bad sprain. Fibrospondy it’s just gonna hurt sprain.” Limp along another month, email again, and I can HEAR the sigh over email when the doc says to come in for new x-rays. Naggy patient pain in the ass. Get new x-rays. That was last week.

Yesterday, I get to the office after an early morning rheumatologist appointment where I mention the sickly-hurt, the not-spondy, not-fibro hurt of the ankle, but I don’t mention it aggressively. The spondy itself is out of control, and both the joint pain and my inflammation numbers say so, I do not have to make my case, the normal range is 0 to 20 and I have an overachiever score of 86. I need RheumDoc to focus on that. I do not have to plead. I do mentally close my eyes and pray for deliverance when RheumDoc ups my prednisone. (At least I know this will help with the spondypain, so there’s that.) Driving down to Los Angeles and back plays all hell with the ankle. Funny how it takes longer for it to hurt from walking than it does from those tiny, tiny movements on the pedals. Tiny movements, tiny tortuous movements. Gah.

Anyway. Back from RheumDoc, nursing the ankle. Open the email from the GPDoc. “Actually, it appears your ankle is fractured. I have put in a referral for you to see the podiatrist.” Pretty cold for a dude who fucked up. I have been complaining about this wrong-hurt sick-hurt ankle since I busted it in early June. Tomorrow is September.

And that bitch is fractured.

I do not care that, as my mom says, it doesn’t really matter because they’ll just tell me to wear a boot or cast it, and I cannot function as a single woman in a second floor apartment with a basset hound and bad joints and a later-this-month flight to Canada if they cast it.

Do. Not. Care.

I care that I have been telling the doctor and his minions that something is wrong and they didn’t believe me. Like it wasn’t a thing because since I have pain everywhere, another bit surely didn’t matter, didn’t mean anything. Like they know my body and its signals better than I do.

And Earlier Me of 2010, 2012, 2014 might not have nagged the doc about it, wanting to be the Good Patient, but I am tired. And annoyed. And doing research on women’s bodies for the PhD dissertation I’m working on, there are stories and then more stories about how women’s pain is ignored or belittled or downplayed by a medical profession run by men, based on knowledge largely gained from men’s bodies.

But I don’t need the research, do I? I’m online. I have female friends. When we start to tell stories, they are shades of the same insanity. I hurt, something was not right, the doctor didn’t listen, didn’t believe, didn’t care, made it difficult for me to be diagnosed, believed, treated. (Never a mention of getting our money back, of course.) Oh, I get angry, and oh, I am weary. Ah, Silly Me of My Twenties, who thought she had the world by the balls and that feminism had done its job so what was the big deal? Silly girl, I miss you. Now I am surrounded with fellow women warriors, scarred, scared, and mistrustful of the medical establishment that is supposed to help us. And it brings me to tears to think of the people just learning to be sick, to live with their illness, who are too cowed to nag.

I wonder if the popularity of naturopaths and natural cures (the well-meaning and the insane alike) is due to the fact that the folks marketing that kind of care listen, and listen with compassion, and at least pretend to believe, whether their treatments are quackery or not. (And not for nothing: it’s not a placebo if it works. Say it again for those in the back.) Another thing from the women of my tribe: even if the care remained subpar, just having a doctor listen to us would raise our opinions of them. We don’t even dare stretch into hoping that they’ll believe us.

We’re not crazy, after all.

We’re in pain.


*I will refer you once again to Eula Biss’s essay “The Pain Scale” for what I think is one of the most true and moving considerations of pain.

An Aside: Memory, Kindness, Trust

A story for y’all on how important is to talk to children to save them, and the echoing effects of kindness. Now, in memoir I don’t know how much is True, and how much my brain has written, rewritten, or invented. (I asked my mom about another memory I have from elementary school, and it turns out very little of the detail was right, so I’m hesitant to say this is a true story.) But this what my child-self remembers:

A very long time ago, when I was in elementary school, I was a crazy A-student perfectionist. (Hard to believe, right?) I developed an unconscious habit of rubbing my temples, and developed burns. Someone, no idea who, eventually decided I should see the counselor. The counselor (though I would see her officially only in school) lived two houses down from us. Mom said it was okay to talk to her, that sometimes we just need someone safe to talk to someone that doesn’t know us, and who isn’t allowed to tell anyone else.

At one point, I talked about how sometimes I wanted to kill myself. How things were overwhelming, how I didn’t feel good enough. How I wrote goodbye letters. When she asked, I told her I did have a method planned–my dad’s white handled chef knives to my throat. Little bitty me thought that slicing the carotid would be a fast way to go.

Little bitty people have grown up thoughts.

I don’t remember a whole lot about that sort of stuff, other than that she was very kind and didn’t yell at me when I told her about that. I’m sure there were discussions with my mom, who had all along been doing good mom things. She didn’t pressure me, I did that myself.

Kid brains don’t always do kid things.

I’m sure we talked about all manner of things that stress, inspire, and impact a child and the way they approach the world. I bet she had very wise things to say. I don’t remember any of that.

What I do remember is that after the talking was done and I didn’t have to see her in school anymore, when my counselor had her first newborn, she asked me to babysit. (I babysat around the block.) Sometimes she was home and just needed space and time to do household things, or shave her legs, sometimes she was out on errands, or if she wanted to go out to dinner, and I bopped around with her chubby little baby boy I called my Buddha baby. He was always smiling. I adored that child.

I was a little surprised that she asked me to babysit, knowing I was crazy, but it didn’t really strike me until I was much older just what a gift she gave me, that kind of trust. I think of myself, of my friends who have children. I don’t know what I would have done, but I don’t know if I have that kind of kindness in me, to recognize what makes a child happy, what makes her feel responsible and valued but not anxious.

She just posted pictures–my Buddha baby, who just finished at the Naval Academy, got married this weekend. I may have rewritten history a bit above, with what I remember with flawed Memory. But I remember her, and the baby, and how she made me feel good about myself, trusting me with her most precious thing.

Memory is a hell of a thing.

Answering Some Questions: Crip Tags, the ADA and Invisible/Chronic Disability, Why I Don’t Have My Cane Today

[Quick recap for new readers: I have ankylosing spondylitis (AS), fibromyalgia, inflammatory bowel disease (IBD)Sjogren’s syndrome, and Reynaud’s disease. My primary diagnoses are the AS, IBD, and fibro, while the Sjogren’s and Reynaud’s are considered co-morbidities. Translation of “co-morbidity”: shit-that-comes-along-with-the-primary. Kind of like Amazon Prime add-on items, get them for a dollar each when you buy the other major items. All of these are autoimmune issues, so essentially my body is working hard to destroy itself in new and creative ways.]

Caveat, and feel free to apply to other individual experiences you have with disabled folks: this story, these feelings, these experiences, and these preferences for treatment and language are my own, though I will occasionally use “we” language for things I’ve found to be common when talking about them with others in my community. Please don’t assume that they are universal or necessarily portable to the experience or preference of others–always ask, unless it’s about something that’s none of your business.

Joining the ranks of the chronically ill and invisibly disabled has been a humbling experience on a number of levels. Life becomes a series of cognitive dissonances. Things we knew about ourselves we may find are not true, no longer true, or aren’t as true as we thought they were. Assumptions about what we would do and how we would do them are shattered–traveling is difficult because my body responds poorly to the insults of the airport and differences in routine, diet, and water; staying up late only happens when I’m sick because if I want to get up in the morning, I need to be under the covers by 10. Discovering my new limitations ranges from the stupid to the colossal: I forget that I can’t just quickly stand up out of a seated position, so I’ll be halfway up before I cry out and realized I’ve stiffened so badly that I need to move more slowly to give my body a chance to creak open. Or I forget my cane on an icy day and am in actual danger of falling and breaking my hip and other compromised joints.

I’m going to respond to some things folks say or think prompted by my crip tags. (As a previously able-bodied person, I see myself in a some of these thoughtless or prejudiced/able-ist comments and thoughts, so I’m claiming the privilege of saying I can know what folks are thinking).

“I hear it’s easy to get disability license plates so people who have nothing wrong with them get them all the time.” (Or: “Do you really need those crip tags?”)

Among the changes since I got sick is that I now have what I call “crip tags,” or what more polite people refer to as disability license plates. You’ve seen them–the little blue dude in the wheelchair prefacing whatever the license plate number is, the fancy blue-painted exclusive parking spaces closest to the building.

First, to get crip tags you need to have your doctor fill out paperwork. For the doctors I’ve worked with across two states, it wasn’t easy or accessible. First, you have to actually be sick, because the paperwork requires not just a doctor’s signature (I’ve heard people chuckle about how easy this must be to fake for lazy people who want closer spaces), but also the doctor’s state medical ID number, which they track and stays attached to the record of your plates. The doctor’s office can (and will) charge a paperwork fee, and in Tennessee I paid more than $85 for my doctor’s signature and medical number on a packet of forms that I myself filled out and left with them for a week. I was lucky and had the money, many–especially those on limited and fixed incomes–do not.

If the DMV finds nothing wrong with your paperwork (cross your fingers, if you can), you get plates for your car, and a placard, intended to be used if the disabled person is traveling in another’s car, or is for whatever reason using a car not their own (I’ve remembered to travel with mine only once, when I was traveling and planning to rent a car, and only because my then-husband reminded me).

Asking for the paperwork from my doctors was awful, I remember thinking that they must think I was weak and trying to get away with getting something I didn’t need. For their parts, they didn’t bat an eyebrow. For my part, I took my cane with me into the DMV on a day I didn’t need it, because I didn’t want to be judged by my ability to walk that day. I felt like like I needed to “present” as disabled in order for my request to be processed in my favor.

“Must be nice to be able to park so close.”

No, I assure you, it’s not nice. I assure you I’d much rather be bitching about the long walk from my car into Sephora while both ambulating and looking down while digging in my purse for my wallet, unafraid of what people think of me when I get out of my supersweet close crip spot, unafraid that I might fall and be permanently in a wheelchair if I damage my already-damaged joints, unafraid that I might shit myself if the walk is too far because my insides are under attack.

Or, perhaps I should say, “Yes, it is nice to park so closely to the grocery on a day where I had to leave my apartment even though it hurt too much because I needed to pick up no more than the one bag of groceries I can carry to fill my empty fridge so that tomorrow I don’t have to leave the house when I’m in this much pain.” But that kind of sarcasm might make whoever I’m talking to feel like an asshole. And wouldn’t that be a shame?

“What even is a disability? Are you really disabled?”

The correct answers to this when being asked by a stranger are “None of your business,” I suppose. But here, I’ll answer: yes, I am. It’s considered an invisible disability because you can’t always see it, but it’s always with me. I used to just say I was sick, but it’s right there in the Americans with Disabilities Act, particularly in the new 2008 amendments. [Note: The ADA site isn’t responding right now, so I’m going to link out to other resources that cover the strict basics.] The ADA defines a disability as having, having a record of, or being regarded as having “a physical or mental impairment that substantially limits one or more major life activities.” The 2008 amendments add “major bodily functions” to major life activities (including the immune system, digestive system and bowel, and they note that “An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” So yes, even on my good days, I still qualify as disabled.

The Amendments also note that a disability limiting one activity need not limit other life activities to qualify. So yes, I am still disabled, even if I can watch Netflix and post funny memes to Facebook while I am stuck at home unable to make it three feet from the loo. (Also, people who cry that folks smiling in pictures shouldn’t be able to be on disability because they’re obviously fine should be pilloried. That’s not part of the ADA or Amendments, but it should be.) I can refer to to an actual ADA lawyer if you’d like more information (serious about this, a friend from college is one and she’s much more knowledgable than I am and would be able to answer your questions).

Now if by “Are you really disabled?” you meant “Do you meet the definition for disability?”, the answer is yes. If what you meant was “Are you disabled enough to really need disability protections and help?” then on a good joint day I would be inclined to introduce my foot to your ass. On a bad joint day, I might have to ask you to drop to the floor really quickly atop my foot for same effect.

“You don’t look like you need those plates, you walk just fine.”

I’ll never forget the story I read of a woman who was flat-out confronted this way in a parking lot, and who was browbeaten into lifting her skirt to show them her compression hose and ulcerated legs. No one should have to put themselves on display like that. If I’m using a crip spot, it’s a bad day for me. Because I now know what it feels like to hurt badly enough to need one of these spots, I try to be conscientious about using them, and do so only when I really need to. Either my joints are so awful that walking feels like being a bad human marionette after being dumped in a bag and hit by hammers, or I have inflamed bowels and honey you’d best be stepping quickly out of my way.

And it does happen. I was with a friend when I was confronted in front of a restaurant by an old man with a smirked, “Are you sick, honey?” with a head-tilt at my plates. I just said “Yes,” and kept walking, but I was sick about it all day, and distracted. I mean, did I really need the spot that day? Was I feeling poorly enough to claim that privilege, and how poorly should I feel before I take it up? Was I disabled enough, today? My later reaction was indignant and impotent anger, but I spent a good long time on guilt and self-doubt first. Who are you to question me when this has been authorized by my doctor? “Are you sick, honey?” I should have responded with, “Why, are you a doctor?” only because I can’t see myself saying “It’s none of your goddamned business” to an elder.

“Are you okay? I didn’t see you using a cane before!”

This one I get a lot from friends and colleagues, and I completely understand and am okay with this question. I mean, they see me, and it’s hard to miss me walking around with my purple paisley cane, or my pink rhinestone one. (Hell, if I have to use one, it might as well be fabulous. I used to collect fabulous high heels. Now I think it might be canes.)

I don’t always feel poorly enough to have to use my cane. In fact, since moving to the warmer and drier Southern California climate, I’m on it far less than I used to be when I lived in the steamy and thunderstormy South. Weather and climate have become really central to my comfort: rain can put me flat on my back, and damp days make me ache something awful. Drastic changes in temperature can trigger a flare, and I find that I overheat easily due to both my conditions and the medications I take. But I adore being able to walk my basset hound up and down the sidewalks of my lovely neighborhood, and that is something I couldn’t do a few years ago without paying dearly for it.

In fact, I don’t always have my cane on me–I try to keep one in the car and one in the office at all times just in case (like spare underwear), but I forget, and because I don’t need it all the time, it’s not a habit to keep it always with me. Even on bad days, I might not be limping–when absolutely everything hurts, it’s not like limping provides one side with any more relief than the other, and it actually causes more damage. I’m probably walking more slowly than normal.

I travel with a cane even when feeling well. Airports are difficult to maneuver on the best of days, and long walks and standing in lines while dragging a suitcase or carrying a bag usually make my hips and SI joint ache. I take advantage of the wheelchair service because sometimes just the length of the walk through security to the gate is something that wears me down even before I deal with the flight and get to my destination. After too many trips where I arrived in tears, I finally use the services available. [And I assume everyone seeing me in a wheelchair or on one of those carts assumes I am being lazy because I am overweight. The guilt is strong in this one.]

Was it okay to ask this? Absolutely–at least, it was okay to ask me this. I consider it genuine concern from friends, family, and colleagues, and I appreciate you noticing me. I don’t consider this any different than asking a friend if they’re sick when they look poorly, and I don’t take offense to it.

Am I okay? Depends on the day, but my usual response is, “It’s okay,” or “It’s fine.” That way no one feels like they have to stand around talking about it and feeling sorry for me. The best responses I’ve had from friends and colleagues to that was “No, it’s not, that sucks, and I’m sorry.” I really appreciate that they acknowledge the suckiness of the situation, and then move on from it to a topic we can do something about.

“Are you afraid?”

I’m afraid of a lot of things. The IRS. Poison ivy. My mother seeing the state of disarray on my kitchen table. But yes, in relation to being sick, I’m very afraid. Chronic illness community forums abound with horror stories of people who are denied disability despite obviously being disabled. (Recently, a friend diagnosed with end-stage terminal cancer was denied disability. The mind boggles.) I am afraid of what will happen if I get so sick I cannot work, for a few reasons. The doctors and medications that keep me functional are in no way possible without health insurance. My work is something I love, that gives me purpose. How can I pay my bills if I can’t work? Even disability is just a fraction of working income, if you can get approved at all. I am afraid of the politics of this country, and how the disabled and chronically ill are perceived as leeches on the system, as burdens, as better off dead and not parasites on the taxes of the able-bodied.

I am afraid of what happens if I am in so much pain that my mental function is compromised. I am afraid of the coming pain–the AS is degenerative, and while I sometimes now have days that take my breath away, I know that worse is waiting, in five or ten or fifteen years but there. I am afraid of how I will get around if I cannot walk. I am afraid of being a burden on those I love. I am afraid of not having control over my bodily functions. I am afraid of being abused if put into a home. I am afraid of never coming out if I am put into a hospital. I know technically we’re all dying, but this feels like dying faster than I had planned, and I am afraid of death.

I say now that there are certain things that could happen that would make me not want to live, but when I get there, who knows. Life is pretty awesome and I’d like to stick around and see how all of our stories go.

“Will rubbing kale on it help?” Probably not, though if I replaced the chocolate in my diet with kale I’m sure other things might improve. On the other hand, nowadays I’ll try anything twice.

Now, my friends and e-friends, I welcome your questions and am happy to answer as many as I can from my perspective (like I said above, your other friends with disabilities may well have different answers, and might not want to talk about it at all). I’m still learning a lot, both in terms of my own illness and ability changes, but also in changes I need to make to my own language that has certainly been ableist. The AS is degenerative, so I’m still learning new things about my decline in ability and how to maneuver in life.

Roid Rage: Some Scattered Thoughts on Prednisone

Let’s talk about something folks with inflammatory disease have a love-hate relationship with: prednisone. An immunosuppressant, it is used for diseases like lupus, rheumatoid arthritis, ankylosing spondylitis, multiple sclerosis, and the like, as well as for severe allergies and other ailments. The list of side effects is a bit horrific and many of them are common for those of us who are on it long-term. Prednisone causes mood change, high blood pressure, messes with your blood sugar, causes cataracts and glaucoma, reduces bone density and causes osteoperosis. When you’ve been on it long term, you can’t just stop taking the stuff, you have to taper slowly.

That sounds terrible, right? (It should sound terrible, and not like something you want to engage in on a Sunday for shits and giggles.) So…why? Well, speaking from my own experience, I literally cannot walk without it. (When I use the word “literally,” I do mean it the way it was intended.) When I first got sick, no one knew what it was. I went to physical therapy for what they thought was thoracic outlet syndrome. I had my gallbladder out (a cholecystectomy, I was pretty proud of learning to spell that back when I had it), which turned out to be unnecessary since what I really had was a problematic levator scapulae (muscle that runs from your neck to up under your shoulderblade). I went back to physical therapy because every time I worked with my personal trainer and did anything with impact, I found it difficult to move for the next week or two. I had used a personal trainer to get fit before, and this hurt wasn’t the worked-too-hard-at-the-gym hurt, or an oh-shit-leg-day hurt, it was what I can only describe as a bad kind of hurt, it was wrong. I knew it was wrong but figured doctors would just tell me that’s how it feels to get un-fat. My physical therapists told me I needed to see a rheumatologist because they caught me unconsciously shaking my hands-my fingertips had taken to tingling and becoming numb. Upon closer inspection, my fingers were swollen like sausages; I told them it was probably just because I was fat. So I worked out harder. I started dislocating ribs by moving too fast, coughing, sneezing.

And then I woke up and could not walk. Excruciating pain. A friend came and took me to the emergency room and I was admitted. Despite testing negative for R factor (rheumatoid arthritis marker) and lupus markers, my joint inflammation was out of control. When the rheumatologist on call heard everything and then the bit about the rib dislocation, he brightened and said, “I know exactly what you have! Herpyderpy dofyperlifytis!” (Ankylosing spondylitis, but I wouldn’t really understand him until the second or third visit, it’s such a strange term.)  put me on some massive doses of steroids, and the next day I felt like I could dance, run, lift small Buicks over my head. Swelling down, inflammation down, pain down, down, down, down. Feelin’ good, feelin’ strong.

Prednisone. Magic.

Magic that made me want to eat everything in sight but also made me so exhausted that I felt like I needed a nap walking from the bedroom to the bathroom in a one bedroom apartment. I was easily irritated–or far more easily irritated than usual–and the mood swings were epic. I wanted off that ride, so the rheumdoc and I worked to taper me off, but at a certain level, even given other medications, the pain and inflammation and stiffness returned. Losing weight is extremely difficult because prednisone messes with your hormones and your appetite, and in the wrong direction. (I never get any of the side effects or illnesses that would help me get thinner, I’ve noticed.) (Not that I’m asking for anything new, please god.) Because of the problems prednisone causes, and my borderline blood pressure, and my borderline blood sugar, and and and, it’s a terrible idea for me to stay on it long term.

I’ve been on a daily dose of it for more than 7 years now.

Every year or so I decide to try to get off of it again, or a doctor wants me to at least reduce the daily dose…no dice. I tried over this summer, and given my pain levels now the same thing is happening. I made it to 7mg/day, but yesterday I couldn’t stop the tears once I got home, walked the dog, and could finally take off my shoes. I emailed my doctor. She has been down this road before. Dropping below 10mg a day, even doing a slow taper, just won’t allow me to function. So she’s taking me back up to 10mg, which is as low as I can go without losing much function. I still hurt, but it’s doable. A daily 3 or 4 on the pain scale, and those are normal good days for me. (For reference, my large head tattoo started at a 5 and after 5 hours of work it ended feeling like a 7 or 8. Much of this summer has been a 6. The past two weeks I’ve been flirting with 7, and yesterday and today were absolutely solid 7s. At 8 things start going terribly wrong, and I consider the emergency room.

Prednisone. For all of its problems, I have to say it works. My body is being destroyed anyway, the drug just destroys it in new and interesting ways, I guess. At least I can walk in the meantime, at least I can do the work I love in the meantime. A lot of folks are not that lucky.  Ah, prednisone, you bitch, I love you. You might max me out on the regular scale, but you have no idea how much I’m looking forward to hitting a 4 on that pain scale again.

Pain Management: Unicorn Doctors and the Low Dose Naltrexone Option

*Let me preface this post by saying that the parties interested in the uses and prescriptions of pain medication are in a huge uproar lately, with the opioid addiction crisis pitting those who want to seriously restrict opioid availability against those who legitimately need this type of medication to function. I find valid arguments on both sides. This post is about my own experience, the options my doctors and I discuss, and the decisions we make in the interest of my health. The post is not a judgment against those using different methods, making different decisions, using different doctors with different medical opinions. And of course, I’m just the patient here. Talk to your own doctor before embarking on any kind of medical treatment.

So, I finally sucked it up and made an appointment with the pain management clinic. I don’t know why it took so long. Well, I do. My pain was kind of sort of managed, except for what we call ‘breakthrough’ pain–the bad sort that comes of a sudden but isn’t representative of the everyday. After a very rough summer (which included an oh-so-graceful tumble down the stairs and a badly sprained ankle that won’t stop haunting me), some of my better joints have gone over to the dark side. The pain and swelling are worse than they have been. I have a new GP who says that pain management is my rheumatologist’s job, despite my rheumatologist’s making it clear it is expected that the GP will handle that part of care, and I hate the feeling of being turfed.** (Gossipy aside: I trust my rheumdoc on this one for a few reasons. One is that she has been a great rheumatologist–she listens, and adjusts treatment according to my experience and her research. Two is that in every previous constellation of doctors, the GP has been the pain management person–across three different medical insurance companies. Three is that when after the new GP noted he wouldn’t do it, and that the company would punish him if he did, I agreeably told him I would let my rheumdoc know that he wanted her to handle that part of my care, and he very quickly said, “Oh, no, no, that won’t be necessary…”. Well, it’s necessary she know if you’re dropping that part of my care, right? And why are you sweating, DoctorBoo? Is it because you know Rheumdoc has no time for petty bullshit? I mentioned you at my last appointment with her and she said she’d handle it. Meaning you. OooooooOooOoh. Anyhoo. Moving along.)

So. Pain management clinic. When I say it aloud, my mental image is of some run-down boarded up junkie house. Intellectually I know that’s unfair. Braincanvas doesn’t care. I mean, the pain management ‘clinic’ isn’t a clinic at all in the way I think of a freestanding medical office–it’s in my GP’s small bright office, same receptionists, same waiting room, just down a different hallway. It’s part of my health insurance company, so it’s covered with a referral, which I had gotten months ago when I thought to ask for it. The doctor was young and friendly and had reviewed my record before I arrived. He seemed very well informed and was pleasantly surprised when I told him I was a pain in the ass patient because as a librarian, I read a lot of the medical literature about new discoveries and treatments–he said the medical librarians were tech most important part part of his medical education. Instant love, y’all. We’ll call him Doctor Unicorn.

Doctor Unicorn and I went over my medical history, recent medical record, medications and current practices. The good news is that he said I’m doing everything I can (well, when I go to yoga, which I admitted I’d lapsed in). The bad news is also that he said I’m pretty much doing all I can. Given that opioids make pain worse, and that this effect seems especially prevalent in fibromyalgia patients, medication is off the table. Except for a not-really-evidence-based treatment…

Low dose naltrexone.

My thoughts as the pain doc is talking: Naltrexone, naltrexone, why does that sound familiar? Something about drug addicts. What they hit heroin overdoses with? No, that’s narcan. Naltrexone…ah! Used to help manage alcoholism and opioid addiction. Why do I know this? I read any and everything, and I’m a librarian. I’m like an information magpie, I collect it all.

(I know all sorts of random shit. You should make me your call-a-friend option on your get-rich-quick show. Friends and family use me for trivia and random things like knowing off the top of my head at 2am out of a dead sleep what the name of the dog-dragon-thing in The Neverending Story was. His name was Falcor, Patrick, and he was a luck dragon. Seriously. How have I failed you that you didn’t know that?)

Wait. I don’t have an opioid addiction and my gut issues mean I drink a few times a year, at best. (I have three bottles of cider that have been in my fridge for about eighteen months. College Me is so very disappointed in Current Me and Me of Eighteen Months Ago who drank half of one cider, poured the rest of that one out, and abandoned the other bottles beside the mustard.) I have pain medication (not a lot and not the good stuff, don’t come to my place to rob me, you’ll be disappointed), but I only use it when things get so out of control that I stay home from work and tend to myself.

Naltrexone is effectively the anti-opioid, binding opioid receptors–bound opioid receptors can’t bind to opioids, thus no high. No high, no fun to drug use. That’s the hope, at least as I understand it.

An aside on painkillers, with the note that I am not a doctor, so this is wildly oversimplified. The problem with opioid use for long term and chronic pain conditions is that it makes your body more sensitive to pain over time. (See a good layperson’s article here.) If you become more sensitive to pain over time, you increase your opioid dose to combat the pain…it’s a terrible loop, and difficult to get out of because pain sucks, and no one wants to volunteer for more of it than they have to. Thus one of the reasons opioid addiction is so prevalent. There is some evidence that opioid use actually prolongs pain (you can read the study here).

So using opioids is problematic on the face of it. I have some other considerations. I happen to have a family history of addiction on my father’s side, which makes me very wary of using painkillers. (In fact, I often err on the other side, which is waiting too long to take medication. Doesn’t sound awful, until you realize that it triggers my various inflammatory responses to get worse, and after a certain pain level, my blood pressure shoots through the ceiling. Emergency level care follows, and I hate going to the emergency room almost as much as they hate seeing a chronically ill patient coming through their doors. Almost.) Opioids will temporarily help me with joint pain from the AS, but it tends to make my fibro flare, another reason I avoid them since I find the fibro more difficult to manage than the AS. (I know what I can do when inflammation goes crazy: steroids, rest, diet. What the hell do I do with feeling like I’m being stung, or filleted, or burned, when there’s nothing there but hysterical nerves?)

Why my hesitation, then, for the low dose naltrexone? Well, the fact that Doctor Unicorn prefaced and postfaced his mention of it with the fact that there’s very little peer-reviewed evidence-based good double-blind studies on the stuff (told you he was a unicorn–a sexy Doctor Unicorn who knows what peer review and double blind and evidence based mean, and holy hell I need to ask this man on a date when he’s not reviewing how physically screwed up I am). The Stanford study often cited had a total of eight subjects; their next study had closer to fifty. Meh. Doctor Unicorn also mentioned that there were unlikely to be any large scale studies since naltrexone has gone generic, so there’s no profit incentive to fund additional research into other uses for it. Sad trombone. He made it even less attractive by noting that it requires a special pharmacy order and so the monthly cost is expensive, and that of his four patients who decided to try it, two dropped it because of the cost, one saw no improvement, and the other moved out of state. The bow on top is that you can’t drink or take opioids while on the naltrexone, so no opioids even on bad breakthrough pain days. (The booze doesn’t much matter to me.) On the bright side, the only real side effect reported has been more vivid dreams. Girl-and-boyfriends, I’m a trained Jungian. Bring me some dreams! That’s not a bug, that’s a feature!

And so he asked me to go read the Stanford articles, to think about it, and to let him know if I wanted to try it. Why am I hesitant? Lack of research, for one. I’ll also admit to being really wary of letting go of the option of pain meds for breakthrough pain. With the low dose naltrexone, I lose the option to at least take something to knock me out so I can sleep through a bad episode, to take the edge off enough so that I can think. Those days are (thank all the gods) few, but when I do have them, they’re doozies.

But shit, I’ve tried everything else. What do I have to lose in trying one more treatment option? Sigh. Time to see if I can invent some more magical room in the budget.

**I learned this phrase from an ER nurse who found me in tears after my primary care doc sent me to the gastroenterologist, the GI doc sent me to the ER, and the ER told me to go home and see my GI doc. She said, “You’re being turfed, honey. That’s what they call it when they keep bouncing you from doctor to doctor. Happens a lot when they don’t know what’s wrong and don’t want to be the one stuck having to figure it out.” I wish I remembered her name, she was very kind to a pained, weeping me.

Well, Shit: When Chronic Illness Hits You in the Gut

One of the various issues I try to manage is my gut. My gastrointestinal system has been a pain in my ass (ha!) since I was young. Everything always moved too fast (medical term: hypermotile peristalsis), and the smallest change in stress, environment, or spices exacerbated that and made me flat out sick. I spent years going to doctors who told me it was all in my head. No celiac, no ulceration. Young Me tried to convince them that it was indeed entirely at the other end. Tears. Begging. Pleading. And doctors telling me it was not a functional problem, so there was nothing they could do about it. (A functional problem is one that medical tests can demonstrate. Which has always seemed odd to me, since my system was not functioning.) Referrals to psychologists for severe life-constricting diarrhea. They couldn’t figure out why the GIs were sending me to them, they sent me home.

At one point, I lost 60 pounds. I was thin, and for a fat girl, that felt awesome…except it wasn’t like I could show it off when I couldn’t leave the bathroom. Saw another doctor who wanted to do an upper GI, so I drank barium (heavy white chalky stuff that shows on the X-ray). The purpose was to take images over time, to see how it moved through my system and to get pictures of my system as it moved through. The doc told me to go sit in the waiting room, and that we would take images every 20 minutes. I tried to explain that they would be waiting too long, that we needed to shorten the timeline. The doc scoffed, silly girl, what did I know. Until I ran for the loo and they got mad that they didn’t get any pictures at all. They called it IBS-D, stated there was nothing to be done about IBS, and scooted me out the door. Irritable Bowel Syndrome, which is what doctors called anything gutwise that they couldn’t explain, and couldn’t do anything about. At the time, it was a hopeless diagnosis. Learn to live with it. Don’t eat if you want to be out and about, and God forbid you do, you’d better know where every bathroom in a five mile radius is. And I did.

Alongside some ladyproblems of terrible cramps, I finally saw doctors about that. Turns out the endometriosis was a problem for my gut, too–when the doctors finally did the hysterectomy, they fond the endometrial tissue everywhere, and had to scrape it from my instestines. Well. Crampy tissue around your digestive tract, of course that will complicate things. I was hoping that would fix everything.

Nope. Sad panda.

Things got better, things got worse, things got better, but the hypermotility didn’t go away. Certain foods were definite triggers, certain foods were sometimes triggers, and only a very specific kind of white rice felt safe (the sticky white sushi rice, not the grainy white rice, and who knew bodies could tell the difference?). I would get strict about my diet, then lazy, because it takes a lot of time and effort to be careful about food. In and out of hospitals now for colitis. Eight colonoscopies within three years. Then ulcerative colitis. Suddenly inflammation was a problem. IBS became IBD – Inflammatory Bowel Disease. It has a name! It is recognized by the doctors as a real disease! Still not much to be done about it. Foods and spices to avoid. Avoid stress.

Then the joints went out on me, and the ankylosing spondylitis and fibromyalgia diagnoses. AS is an inflammatory autoimmune disease, and likely to be tied to the inflammatory disease in my bowel. IBS and IBD are common comorbidities for fibro. (Comorbidities are other ailments commonly diagnosed along with a primary diagnosis.) Everything is connected. Light bulbs went off for the medical folks. Hooray! But now everything is getting worse. The AS is degenerative. The doctors don’t know enough about fibro to say much–they’re just getting around to recognizing it as a nerve sensitivity disorder instead of deeming it hysterical woman’s syndrome.

Prednisone, a steroid, keeps a lot of the inflammation at bay, but the side effects are crazy weight gain and messing with mood, hormones, blood sugar, and bone density. For comparison, most doctors are hesitant to use it for more than a month on normal people. I’ve been on a high dose daily since 2010. I’m on four different antispasmodics, not that you would notice. “Enough to constipate an elephant for a decade,” one of my doctors said. But if I skip them, it’s noticeable. I’m not interested in what the hypermotility looks like without the assistance. I take two weekly injections to suppress my immune system, which makes me susceptible to everything. If I get an infection and have to take antibiotics, I get C.Diff (clostridium dificile), an overgrowth of bad bacteria in the gut that is extraordinarily painful and dangerous. It is one of the secondary infections that most kills people in the hospital, particularly the very old, the very young, and the immunosuppressed. I have had it five times, and now my record has a red stripe on it that says I have a history of the infection to let the doctors know that I am highly likely to get it again.

I’m not 26 anymore, y’all. I think my body is getting tired.


Safe foods are no longer safe. Sugar and carbs and dairy and fried or high-fat seem to make everything worse. Vegetables raw or with seeds or rinds are out. Beef is out. Spices are out. Even safe foods react poorly to me moving around at all after eating, so getting home immediately kind of puts a damper on outings. Nowadays small stresses impact me hugely, so I have to manage how I engage with stress. Inflammation is the enemy: too much joint pain for too long triggers the GI system, too much GI upset and inevitably my joints will flare. Pain and the muscle tension from it exacerbate both the AS and the fibro; opioids make fibro pain worse by sensitizing the body to pain, and I avoid them because of genetic predisposition to addiction, so pain medicine is out. Tylenol is a teardrop to a sea of flame. Wearing anything that clinches in the middle (most pants, especially jeans, skirts with anything but an elastic waist) is a guaranteed GI sit-chu-ayshun, problematic since I’m an apple-shaped person and everything cinches me at the waist.

These are not necessarily complaints, these are the facts you would need to know if you were interested in how it is to live in this body.

Yoga helps, particularly with giving me tools to moderate stress and to engage with my muscles in ways that keep me mobile and keep inflammation down. The Autoimmune Protocol diet (AIP) does help, even though there are many foods even on that restricted food list that I can’t digest properly. Dresses instead of pants. Proper sleep. Mindfulness meditation, breathing exercises. Acupuncture, physical therapy. Ginger helps, and ginger kombucha is a staple in the house. Ginger candy intended to fight seasickness helps the everyday nausea. Having a sense of purpose is important because it gives me a thread to connect myself to the future on the worst days–my work connects me to wonderful people and my sense of purpose in working with people, my studies connect me mentally to engaging with the world of ideas.

(People ask me all the time why I take on additional studies. It doesn’t sap me, it energizes me. Learning reminds me that I’m alive. And yes, I could do the reading without taking an official course, but if I’m going to do the work I might as well acquire the additional qualification. I’m an academic Girl Scout. Some have supported me in this. Some have not, out of their concern about me doing too much. But it allows me to generate and bleed off a different kind of energy, and it is crucial to how I’ve built my survival tactics.)

How does this interface with mental illness? The fight against depression is real–chronic illness and pain, and the work to combat it, is exhausting. It is exhausting to know that “chronic” means you will never be cured. You can be managed. Maybe. If everything goes well. Looking into an uncertain future that is dependent on the health care situation, on the turns the disease takes, on how long medications are effective, on the coming and going of medical professionals, on certain degeneration over time is fucking terrifying. I read the stories of others who share, and shudder at how the system for disability benefits works, at watching other-mes lose family. Friends. Homes. Looking into the future on the worst days when the pain turns my vision black is impossible, so I have a litany of good things in my life I mentally recite into the darkness to keep me tethered.

It is a lot of work to be chronically ill. It’s even more work to maintain as much health as possible. A full time job, really. If you have someone in your life you are close to, ask them. Usually our immediate response is “I’m fine,” but if you are interested and tell them so, some folks will be happy to tell you the things they have to do to function. Aside from the daily things, some of the things I am embarrassed to have done include cutting my hair short because keeping my arms above my head to wash long hair was exhausting and drying the thick mass took too much energy and overheated me in the morning; replacing much of my wardrobe with dresses that may make me look pregnant but don’t squeeze my tender innards; keeping more than one large bottle of emergency Pedialyte in the fridge because when I get sick I get dehydrated easily; trading in my beloved heels for clunky orthopedic clogs because of degeneration in my hips and SI joint; keeping emergency clothes in the office in case my GI system decides to stage an epic revolt. Think about that, a grown ass woman carrying extra undies like she’s a toddler in potty training. You have to be prepared for the rough days, and take evasive maneuvers, like the hair make sure you stave off the rough days as much as you can.

There are more rough days lately, probably due to a topsy-turvy summer. I’m fucking weary.

That said, in some ways, it’s better than it was. I have great specialists who are all on the same medical record system, which is an absolute change to my universe. Both my gastroenterologist and my rheumatologist are young and still hitting the latest research reading and conferences. They are actually in the same hallway in a hospital, they have lunch together regularly. They coordinate their efforts, they know the meds I’m on, and why I’m on them. When I broke down in my rheumatologist’s office saying that I know the AS issues would improve if I could lose weight, but nothing was working, she noted that I’m on massive doses of steroids and weight loss is unlikely to happen until we can taper me down. Every time we try, the inflammation comes roaring back with a vengeance. So, good doctors. I have wildly supportive friends and family who support me from afar on Facebook and other networks, who call or message whenever. My mother who works full time to maintain her own life flew from New York to California twice, for a total of almost four weeks, this summer to help me with a disastrous move because I was physically incapable. My best friend left her husband and toddlers (yep, plural) to spend a long weekend with me to lift my spirits when I was tanking. My best friend in the opposite time zone stays up until the wee hours to call me and encourage me. My coworkers are beyond understanding, they are actively helpful and kind even when I have been inconveniently absent, or slow-moving, or a flare disrupted plans. We do wonderful things for our faculty and students, and that my team wants me with them for that means the world to me.

And so my people, real and e-, near and far, make space for me. I am still well enough to work, and because of that I have health insurance to keep me functional. I know exactly how lucky I am. Many of us spoonies (folks with chronic illness) are nowhere near so lucky. And being lucky probably makes it easier to keep my sense of humor.

I am the Poop Queen. Friends call or message when they are in GI distress. I will totally stay up and chat with you while you’re miserable on the toilet, because I understand how cold and lonely it is when you’re worried that people might find your corpse on the pot. Poop jokes are de rigeur at my place; back when I was married, we collected them to surprise each other with new jokes once in awhile–usually when I was trapped in the bathroom and we were chatting back and forth through the door. I’m pretty sure my autobiography will be titled Oh, Shit! Tales from the Queen of the Throne.

I don’t share this to be gross, though I do think the Puritanical way we treat bodytalk suppresses those of us who are chronically ill, and live lives centered on the body and its malfunctions. I share my GI issues first because sometimes it’s just fucking funny to think about a hypermotile system as the worst superpower in the world. I share them as a shout into the void to both vent my anger and to see if there’s anyone else out there who can empathize (and I’ve been lucky to live in the internet age of social networks and online groups for all sorts of identifications). I share them to let others know they’re not alone, to try to make space so that others following me can be slightly less afraid of being ‘out’ about their disability. Right now I hold some privilege, because my disability is largely invisible. I don’t always use a cane. I’m not always rocking in pain in front of my computer. I’m not always running off to the loo. Hell, a lot of my friends probably remember be being mostly-largely-sorta normal before the autoimmune stuff really hit in 2010. Will watching, or hearing about, my decline into disability make folks think twice as they engage with others who might need similar thoughtfulness, kindness? Maybe not. But it’s not in my nature to stay silent. And so.

Here we are.

Well, shit.

Have You Rubbed Kale On It?

When you are sick, people are lovely and try to be helpful. It is difficult to understand an illness that can be managed, but will never go away, but people still want to be helpful, so they will let you me of everything they’ve head has worked, whether they heard it from grandma, someone else in line at the grocery, on Facebook, or some dude on the internet. Some of the things I regularly hear include:

Have you tried aromatherapy?

Have you tried essential oils?

You should go gluten free, you would feel so much better.

You should do yoga or tai chi. Thousands of years of Indo-Asian medicine can’t be wrong.

Doctors say sitting is the new smoking, you should exercise and you’ll feel better.

You should wish on an amethyst at the dark of the moon.

You should sleep more.

You should sleep less.

You should do acupuncture.

Acupuncturists are charlatans, go to a chiropractor.

Chiropractors are charlatans, go to an acupuncturist.

Both chiropractors and acupuncturists are charlatans, go see a physical therapist.

Have you rubbed kale on it?

Okay, I added that last one, because it kind of captures the ridiculousness of things. Folks don’t realize that when they offer remedies for a sore throat, the sufferer will only be dealing with that soreness for a few days, so I only have to hear about possible remedies for those three days. When you have a chronic illness, there’s no end of the illness, though it may wax and wane. This means there’s no end of people offering remedies, and those remedies are usually based on very little medical research. Because I get so much of it, I can become weary and it is difficult to offer enthusiasm and effusive thanks after a few months, much less years, of this.

But the person offering help does not know that they are the forty-seventh person to tell me this thing, or that it contradicts current medical research, or that it is something I am already doing, or that they are contradicting themselves by offering the opposite of the remedy they offered last week.

I try to remember to be grateful that my people care enough to want me to feel better, and I do actually file their recommendations away. My first line of defense against this illness includes evidence-based medicine (I’m a research librarian, after all) and my specialists’ recommendations. I have an entire team of specialists that keep me in working order (like I’m an older model temperamental machine, ha). On days like today, bad pain days where I’m in the middle of a flare, ready to rip my skin off and begging for relief, I apply my doctor-prescribed medicines, and then I go to The List. I’ve got cassia and cinnamon essential oils mixed in with my cocoa butter lotion. I drink fennel tea, I put turmeric on whatever I’ll eat for dinner, I’ve got a chunk of amethyst in my pocket, I’m working on the ujjayi yoga breathing that is supposed to stimulate the vagus nerve which will reduce inflammation. I’ll try anything twice, and even if there’s a placebo effect–hell, that’s better than no effect. If we can trick my brain into thinking I’m better than I am, I’m in.

So, here we go. Let’s talk about chronic and invisible illness. I’m going to tell the low-down dirty truth about my experience as a chronically ill woman in a society that expects the sick person to either get well or die, not to linger in the liminal space between for a few decades, making trouble. Come with me, I’ll tell my stories and you can tell me yours, we can find where systems let folks like me (and you, if you’re a spoonie) fall through the cracks or deliberately exclude us. And we’ll figure out a way to make sure that “invisible illness” doesn’t mean “invisible person.”

I and my Irritable Bowel Plushie welcome you. I hope you are feeling well today, for whatever value of “good” your body will allow.