It’s the height of irony to me that in the year of being completely untreated for my chronic daily migraine, I’ve had pieces about medication get published.
Why am I untreated? Well, it isn’t by choice. I found out during a renewal interview for medicaid benefits that I actually should never have been qualified for them to begin with…but had been receiving them for two years due to an agency error.
Yes, you read that correctly. Two years of treatment that I could never have afforded, including a specialist and botox–which happens to be the only treatment thus far that made a marginal difference–now gone. I was reassured by the supervisor I spoke to that since it wasn’t my fault, at least I wouldn’t be prosecuted for defrauding the government.
Well, thanks. What a relief.
But surprisingly, that was not and still is not my major concern. Not that not being prosecuted or responsible for paying back thousands in assistance isn’t a good thing, mind you…but the treatment that was giving me enough improvement to be functional a few days a month was and is gone.
Just like that. Gone.
It’s possibly the worst thing I’ve been through in the past few years, and if you’re wondering how terrible that could really be, I invite you to take on my chronic daily misery for a week. Really, I’ll gladly share.
Because when you’re not functional more days than you are even minimally functional, a few days makes a huge difference.
And money…well, in my experience that sometimes (often) makes ALL the difference often in whether one is functional, in what treatments we can try, and even in how we are judged for our illness and what we do for it.
Judgment of the chronically sick and disabled is alive and well, in case you thought it wasn’t in this more PC era.
We’re given the side-eye for what we may have done to “cause” our health issues (um…be born? Mine is ’caused’ by genetics, thanks) and what we’ve done/are doing/aren’t doing to treat our condition; from “OMG, you’re putting those prescribed toxins into your body? How can you do that?” to “Well, if you’re not going to try ____, you must want to stay sick,” as if a few minutes of Google confers a specialty doctorate in our disease.
Unfortunately, all those treatments and medications and doctor appointments take….*drum roll*….money. Doctors aren’t exactly lining up to take patients pro-bono, despite the number of non sick people who are certain I can find someone to “work with me” on cost or payments (see, the problem there is that assumes an income at all to “work with”).
And Medicaid, disability, and insurance through the ACA are not the catch all safety nets people assume they are.
Plenty of people who qualify for medicaid in one state would not in another, because adult Medicaid is not federally mandated. It’s up to the individual states what the cutoffs for qualifications are and which benefits are granted. Also, it’s very hard to qualify if you don’t have a minor child in your home and aren’t working at least 20 hours a week, unless you are disabled.
Disability…I don’t have much good to say there. Plenty of legitimately disabled folks can’t qualify for disability. For one thing, doctor records are one the main things needed to make a decision, and since I haven’t been to a doctor due to lack of money in a year, my appeals have denied on that basis DESPITE having a Game of Thrones series sized stack of paperwork from doctor visits alone on my initial application. Also, my illness isn’t considered disabling by and large. (Although I don’t know many people who can drive to work, much less work, with frequent vertigo, or aura, or crippling pain. Go figure.)
Insurance through the ACA…first, will there be an ACA if Republicans in Congress have their way? Second, you still have to pay for insurance through the marketplace.
Sigh. So that’s why I’m untreated. Fun times. (Not really. Why is that the expression for un-fun times, anyway?)
Having to explain this is pretty exhaustive, which is why I usually don’t–people who want to judge are going to regardless.
And why it’s kind of hilarious to me in a weird way that I have an article ABOUT MY LOVE/HATE RELATIONSHIP WITH MEDS published in Teen Vogue this month, via The Mighty, who originally published it…titled Please Stop Judging Me For Taking Pain Medication.
Does anyone not see the weird funny in that?
There’s also the fact I’m almost 50 and being published in a teen magazine, but I figure my coolness quotient has that covered. 😉
I’m still pretty thrilled about it (despite the disagreement over the title you can see in my screenshot which was resolved pretty quickly- thanks to The Mighty and Teen Vogue for being cool about that) , because I think it’s an important article. Hit up the link and check it out, and let me know what you think!
Be well, friends! – Selena