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.

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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.