i am disabled

i had a pretty difficult conversation today in which a good friend told me that she is jealous of the security my disability money provides. for those not in the know, i have been on disability since early 2003. i’m one of those lucky folks who was approved the first time i applied. i get it for both physical disabilities & mental health issues. my mental health issues are mainly anxiety & depression, both of which i have learned to manage pretty well (especially the depression), but which still affect my life in various ways pretty much every day. i have a much more difficult time managing my physical disabilities.

i have some weird birth defect wherein i was born with an incomplete spine. i am missing a few vertebrae in my lower back. i also have fairly severe scoliosis. this may be related to the missing vertebrae. my spine may have learned how to curve over time in order to support the uneven distribution on weight along my back due to the missing vertebrae. on top of this, i injured my back really seriously when i was 18, in a workplace mishap. i damaged a lot of nerves in my spine & have some fairly minor (comparatively) partial paralysis in the right side of my body. it mostly affects my right arm & my neck. i went to physical therapy to recover motion & passably normal function in my leg. i was in physical therapy for months, but thirteen years later, i can walk pretty normally. but on top of all of this, i developed arthritis, which has spread all over my body. ten years ago, it was pretty centralized in my back, hips, & knees, but now it’s in my feet, hands, arms, neck, & has recently spread to my shoulders. the arthritis means i live with major amounts of chronic pain every single day. some days are worse than others. i’ve had days when i couldn’t walk, move my neck, or lift my arms. those days are fairly infrequent. my daily battles involve things that other people don’t think twice about. it’s difficult for me to hold & use utensils, button a jacket, & write things by hand. it’s very painful for me to sweep a floor. often, when i wash dishes, my hands sometimes lock into claws & i can’t move them. if i’m sitting on the couch reading a book, it’s difficult for me to hold the book open. little things like this cause me significant amounts of pain, which is only becoming more severe & widespread as time goes on. & i’m only 31. there’s no cure for arthritis, so i have to make my peace with the fact that these problems aren’t going away, & will in fact only get worse.

when i was initially diagnosed, my orthopedic specialist said i would probably be in a wheelchair by the time i’m 30. clearly, he was wrong about that. but we’ll see what the future holds. i also have to deal with the fact that my arthritic joints are more prone to injury, & take longer to heal if they are injured. seven years ago, i sprained my ankle tripping on a rock in my backyard. i had to wear an ankle brace & walk with a cane for six months. & i was only 24 years old! it was no fun to roll into a zine fest leaning on a cane.

chronic pain is pretty much impossible to describe to someone that has never experienced it. i have had some kind of chronic pain somewhere in my body every single day for the last thirteen years. sometimes, it’s so bad i cry. there have even been times that i have thought about killing myself just to make it go away. (this was especially a big problem right after i hurt my back, when i couldn’t move my right leg at all & couldn’t get out of bed for months on end.) i’m a lot more okay with it now, just because i’m used to it & have developed some skills for working around it, but it definitely sucks. being on disability has literally saved my life. i can’t imagine what job i would actually be able to hold down when my physical limitations are combined with my mental health issues.

i was approved for disability when i was 22, & the government determined from my application that i became chronically & permanently disabled at age 18. therefore, when my dad died right after i turned 23 & i got divorced a year later, i became eligible for the disabled adult children of deceased parent benefit program. this enables me to collect disability insurance as well as my dad’s social security guarantee. the thinking is that a parent would financially support his/her disabled adult child if s/he were alive to do so. in his absence, the government gives the disabled adult child the social security benefits the parent would have collected upon retiring. disability insurance alone is a very meager income. it would be a huge challenge to live independently on it. i did it for six months while i was waiting for my divorce to be finalized. $525 a month, & my rent alone was $400. you do the math. adding my dad’s benefits to the mix means i am able to support myself independently–although i have to live a fairly frugal lifestyle. which i’m okay with, because i am/was(?) a punk & that’s how punks roll.

of course, this is a fixed income. if i find one day that it’s not enough money to get by, i don’t have any options. i can’t apply for a better-paying job. i can’t further my education in hopes of a professional career & the attendant boost in income. this is it. & there are other caveats as well: if i ever decide to live outside the united states, i lose my disability money altogether. if i ever get legally married, the government will pull the extra money i get from the disabled adult child program & i’m back to just my $525 or so in disability money. i would have to rely on my partner to support me financially, which is a lot to ask of someone, & which is something that makes me very uncomfortable. i’m not sure what the rules are around having assets (ie, if i were to sign a mortgage, even if i wasn’t the sole person responsible for paying down the mortgage). i’m not sure how social service programs i may be eligible for if i were to have a child (ie, WIC) would impact my social security income.

so, you know, it’s not a perfect system. but it works for me for now. not having to sweat the bills & look for a job definitely goes a long way toward helping me keep my depression & anxiety in check, & being able to be a homebody definitely enables me to take the time & space i need to deal with my chronic pain issues. for example, i can chill out at home & sleep or take a bath if the pain is really intense, rather than forcing myself out to my job. toward the end of my life as an employee, i was taking a lot of “sick days” that were really “too much pain to get out of bed” days. i don’t have to worry about that stuff anymore. & my schedule is now flexible enough to do self-care things like water aerobics classes, out-patient surgery to cauterize pain-transmitting spinal nerves, etc, without having to take time off.

okay, back to the situation with my friend. i see very little in my situation to inspire jealousy. her main point, repeated over & over, is that it’s a privilege for me to be able to make ends meet without sweating my next paycheck (though i’m always cognizant of the fact that the government could pull my benefits any time they want, & i am subject to regular, extremely arduous, review processes). is it a privilege for the government to provide a basic income to people who cannot provide an income for themselves? i honestly wouldn’t call that a privilege. i think it’s pretty much the least they could do. i’m not one of those people who thinks “privilege” is a dirty word & freaks out if someone says i have it in some way…but considering that i get this money because i am disabled, & my disability is a pretty huge detriment to my life, for which i have faced some very clear-cut examples of prejudice & oppression…i definitely think “privilege” is the wrong word to use.

in my years of experience being on disability, i have had several people in my life who seemed jealous or resentful of my guaranteed monthly income. a few people voiced their opinion that i am squandering my money if i buy myself a treat with it (ie, cute shoes, a decent computer). i see this as paternalistic nannying bullshit. what, a person can buy whatever the fuck useless or frivolous doodads they want if they go out & earn their money everyday at a job, but someone like me should grovel & be grateful for whatever dregs they can get? these are usually people with a fair chunk of money & financial security, & some unchecked ideas about what poor people deserve. key word: deserve. these people tend to be very hung up on who deserves what.

the other kind of person in my life has been the person that is struggling to make ends meet themselves, maybe by hustling away at some self-employment, or at a low-paying retail or food service job. these people are jealous that i make just as much money as them (ie, not much) without having to leave the house. they seem to think i have a pretty sweet gig going, & sometimes they passive-aggressively congratulate me on “snowing” the government into giving me money. believe me when i say i am not snowing anyone. live a week with the pain i live with every day & see if you think i fooled anyone into declaring me disabled. these people tend to have more jealousy & resentment around my income & financial situation. they may say something like, “going to work makes me really anxious, but you don’t see me looking for a hand-out.” & i say, “why the hell not? if you really think your anxiety constitutes a serious disability that negatively impacts your life on an ongoing basis, apply & see what happens.”

the bottom line is that once these opinions bubble to the surface, the friendship usually doesn’t last too long. i have had really, really bad experiences around this issue, & i think the bottom line is that someone who is jealous of my perceived financial stability due to my disability income is a person who does not take my disability seriously. it is NOTHING to be jealous over. if i could wake up everyday feeling totally healthy & pain-free & have my dad be alive again, i would gladly work forty hours a week, even if it was at chipotle or something. but it’s just not an option. & at this point in my life, my pain & my physical limitations are serious enough that i NEED my friends to take my disability status seriously. it’s a huge part of who i am as a person, & making jokes about it or being jealous basically amount to minimizing a hugely significant & difficult aspect of my existence.

so now i’m dealing with it again & i’m pretty upset. i really thought i’d gotten to the point where i was making good choices about my friends & was only sharing my disability status with people who could be trusted to fully respect that. i like to think of myself as a good judge of character, but…this happened. i have never ditched a friend SOLELY because they made some fucked up remark about my disability…but usually the fucked up remark has been the first indication i’ve had of a toxic stream slowly killing off the friendship. i am really bummed to think that something like that could be happening again, & i am trying every way i can to try to understand this person’s perspective & give them the benefit of the doubt. but personal experience has shown me that not taking this remark seriously as a potential cancer in the friendship will only lead to more heartache down the road.

i guess i am writing this for anyone who may be reading who has a friend struggling with a mental or physical disability. i am saying: take that shit seriously. it’s not a fucking joke & it’s nothing to be jealous of. if your friend’s condition is serious enough that the government has recognized it & is providing for their basic survival, that is a big fucking deal for your friend. they probably have days where they feel unbelievably shitty about the fact that they can’t provide for themselves–even just by washing dishes at noodle & co. plus, they’re dealing with all the restrictions the government places upon them in exchange for their survival money. there’s a decent chance that that money is the only reason your friend is still alive. don’t resent them for it, don’t waste your time being jealous of them. trust me: there’s nothing going on with them that you want for yourself. if they could trade their money to have your health, they would probably do it. even if your friend doesn’t often talk about their disability or make their disability-related limitations obvious to you, they still deserve respect as a whole person, & their disability is part of their wholeness. be cool.

Published by Ciara

Ciara Xyerra wrote zines for the better part of two decades. She has a brilliant & adorable preschooler named Ramona & sews as much as she possibly can. She lives in Lawrence, Kansas with her boyfriend. She enjoys catching up on "The New Yorker", meatball subs, keeping it cranky, intersectional post-third wave feminism, dinosaurs, & monsters. If you have nothing nice to say, she recommends that you come sit here by her, so you can say not-nice things together.

23 thoughts on “i am disabled

  1. Thanks for posting this. In classes I’ve taken on economics of public policy, it’s been shown that one common method the US government uses to reduce the cost of public welfare programs is to make them as uncomfortable as possible for the recipients: restrictive, bureaucratic, confusing, and poorly advertised. Aside from limiting the people who qualify for needed programs, they try to discourage as many people as possible who qualify from participating.

    Some punks choose to work fewer hours than they theoretically could (though I’d argue many of them devote those hours to unrecognized, unpaid labor like activism or care for others), leading it to feel like qualifying for food stamps, heat assistance, or whatever is scamming the system. Even when they are really struggling to pay rent and not be anxious and make ends meet! But as you make clear, that’s some bogus internalized bootstrap-pulling-up “welfare queen” nonsense, and without an actualized anarchy utopia mutual aid world, govt welfare is the right that helps a lot of people to live in a society that undermines their lives in myriad other ways. I got that Crass song in my head now: “Do they owe us a living…?”

    But hey, Ciara, I read your blog (and book reviews!) all the time, and really appreciate the thoughts you choose to articulate and share (also you are hilarious). Thank you for your constant critical writing. I learn a lot from reading your work!

  2. I really liked reading this, so thanks for posting. I’ll have more to say later, but now I’m super tired (hello, disability!) so I’ll reply again.

  3. THANK YOU. Especially that last paragraph. And this sentence: “these people tend to be very hung up on who deserves what”. YES.

  4. What a shitty argument from your friend! Ill thought out, lazy and totally ignorant of THEIR OWN privilege as a person without disabilities. Excuse the caps but I’m outraged, and annoyed that they’re so sure of their bullshit that they’ll foist it on you.

    As if you should have to defend getting basic support as a person with disabilities to your ‘radical’ community! Ugh!

    Your blog is fucking great, by the way.

  5. “[…] although i have to live a fairly frugal lifestyle. which i’m okay with, because i am/was(?) a punk & that’s how punks roll.”

    We use present tense, not preterite. Future imperfect, if you’re feeling an extra little cheeky.

  6. hi i just wanted to say i related to some of the things you said and i’m sorry that on top of everything, people you thought were friends turn out to be not understanding at all. i related to thinking about killing myself just to end the pain. i have been unwillingly subject to group stalking for several years now and struggle with incredible anger, mental anguish, mental exhaustion, depression, overwhelming feelings of vulnerability and insecurity. i walk a line between trying to keep moving forward in my life as if this crap wasn’t happening and trying to take opportunities to confront, block, or end the invasions. worst of all is when i realize i have fallen victim to some orchestration that other people don’t see (i assume, but maybe some people do, i don’t know which is worse; they are both hell) and there is nothing i can do to express how wrong it is, that i want it to stop and never to have happened, that i am not even myself and this isn’t even my life any more. sometimes i mourn the person i could have been and dread waking up. i don’t find that i have anything of value to say right now i was lying awake in bed and remembered that i saw this post and thought i could be honest for a moment. i’m not feeling better or like i said anything that helped but i do think it’s the right thing to do to be honest, even if i can’t explain everything.
    anyway, i wish you the best. thank you for sharing your experience.

  7. I’m sorry you are going through this. I hope you find some more supportive friends…. You really hit the nail on the head with this quote:

    they probably have days where they feel unbelievably shitty about the fact that they can’t provide for themselves–even just by washing dishes at noodle & co.

    Absolutely. If I had the power to switch, I would much rather be healthy and working at a job (and pretty much any job) vs. being disabled and getting SSDI. There are days when I not only miss my job but other little things that the healthy folks take for granted, like your examples of just being able to sweep the floor or do the dishes without it being a huge struggle. I do try to focus on the positive, and remember all the things that I can do, but that does not mean that there is not a sense of loss over all that I can no longer do.

    People obviously don’t realize what they are saying when they say you have it easy or are lucky. I hope your excellent article can help to educate some people out there who think that those of us who “don’t have to work” have it easy. Even that phrase is wrong. It’s not that we “don’t have to work.” The correct statement is that we are “unable to work” and have provided the supporting medical evidence to the social security office.

  8. Dealing with my anxiety is what is giving me the most anxiety right now. So excuse me while I type. My family wants to take advantage of the fact that I will have health insurance for four months until I’m 26 starting in January. I’ve had anxiety my whole life. My family wants me to get money from the government for it. But I’m really worried about the process. I don’t know what that entails but like Kyla says in the above post, it probably is difficult or everyone in the US would be applying for money. I’m envisioning being on all the different mental drugs they can think up and having to visit the doctor every week until they finally say “okay, the drugs don’t work for you, here is your money.” And personally, mental drugs are the one option I really don’t want to take. I’ve read too much about them, I guess. And I don’t want to deal with the side effects. Isn’t there other options? I’m not sure if I have depression, but if I do, it has been with me my entire life. Ever since I can remember. And I’m pretty sure that it is probably caused by anxiety. Of course, someone in my situation wouldn’t be happy all the time. So I’m afraid the doctors will want to treat any depression first and not the anxiety and general low self-esteem issues I’ve had. Kind of like dealing with the effects (depression) and not the causes (anxiety, low self-esteem). If I didn’t have the anxiety, believe me, I’d be much happier. And I also feel like doctors in general are very intimidating and really don’t want to deal with them for different reasons, so I probably wouldn’t even be able to say anything about any of this, even what I just typed here. I feel the same way. I don’t want money from the government. I just want to be able to work. And I feel with a job, most of the anxiety and depression would go away.
    Sorry, this post just made me type. Typing it helps, even if no one else reads it.

    1. well, i read it. the process of applying for disability is kind of complex. you can go to the government’s social security pages & check out the applications. you don’t NEED to have letters from doctors or a history of medical treatment in order to apply, but it is helpful. the judges take it more seriously if you have proof that you have a medical condition, which is best proven by seeking out medical treatment. if you are denied, you can appeal, & you can continue to appeal like three times within a set period of time. most people are not approved the first time they apply, but a lot of them are approved on appeal. i am one of the lucky ones that was approved my first try, & i was probably helped by having letters from my therapist, psychopharmacologist, & orthopedist.

      however, if what you really think would be helpful is having a job, it might be better to focus your energies on finding a job & not applying for disability. applying for disability can be stressful & time-consuming, so i wouldn’t recommend it if it’s not really what you want/think would be best for your personal situation.

      as far as doctors go…if you take advantage of seeing a doctor for your anxiety issues, & you want them to focus on your anxiety & not depression issues, just state that up front. just be like, “hi, i am seeking treatment for my feelings of anxiety.” during intake, they will take a complete psychological profile, which involves asking questions about symptoms of depression (along with lots of other psychological issues). but when you’re one on one with the doctor, you can explain your perspective that your depression symptoms are a side effect of your anxiety, & treating the anxiety is your main priority. a good doctor will be happy to have a patient with an idea of what she wants, & will be willing to work with you on that.

      when i first started seeing a therapist, he was asking me all the usual life questions to try to figure out what area of my life was causing/being impacted by my mental health issues. this included questions about romantic relationships, family, etc. i have a pretty messed up family/childhood situation. it’s like catnip to therapists. so i was honest with him about that, saying, “my parents were alcoholics & drug addicts, there was a lot of emotional abuse, homelessness, etc…but that’s not why i’m here, & i don’t want to talk about that stuff,” & he was receptive to that. he let me manage the focus of our conversations. when things came up that i felt were connected to family/childhood, he let me take the lead on addressing those things, & i appreciated that.

      though it’s also true that when i went through my big depression that caused me to begin the process of starting therapy/applying for disability, i totally did not recognize that i was depressed. i thought i had mono. the medical doctor i saw to get a mono test asked me some psychological questions (i didn’t even realize she was doing it) & then gently referred me to a primary care doctor to look into a prescription for anti-depressants. i was dumbfounded. & i felt really bummed that maybe i had depression & not mono, since depression seemed so much more intractable & permanent. in retrospect, she handled the situation really well & referred me to treatment that was indeed helpful to my actual circumstance, & i did myself a favor by following through with it. but it’s totally a judgment call, because i have also seen plenty of doctors that had their own ideas about what was wrong with me, & treated me accordingly, & so i got a lot of treatment for problems i didn’t really have (such as bipolar disorder).

      oh, also. psych meds are not a pre-requisite for being approved for mental health disability. i’m on disability for both mental & physical health issues, but i don’t take any prescription medicine for anything right now. i went through several years were i took a lot of drugs (mood stabilizers, painkillers, sleeping pills, etc), but i weaned myself off everything a few years ago. not because i don’t think that stuff can help people, but because i didn’t think it was helping me. obviously if i don’t have a mood disorder, i don’t need to be on lithium. it would be nice to have access to prescription painkillers at this point in my life, but they are expensive (i don’t have any prescription drug coverage), so i’m trying to manage things on my own for now. i know people that have been on disability for years, without regularly seeing doctors or taking meds, & it hasn’t affected their cases. so although there are many hoops to jump through in order to get disability, & certainly doctor’s letters, a medical file, & proof of on-going medical treatment are all helpful to being approved, they’re not necessities.

      1. thank you thank you for reading and replying! I would love to be able to find a job, but I live in the middle of nowhere and never learned how to drive, so even if I didn’t have anxiety, not driving in itself just gets me stuck in this situation. I wish dealing with the medical system was as easy as you make it sound. I know you said you don’t have drug coverage, but what program or insurance or whatever do you have that allows you to be able to pay to go to therapists and other doctors? or does that just come with disability? How were you able to pay for it before you had disability? I don’t even know the names of the programs I could be applying to for disability. I just thought the doctors worked all that out? I’m clueless. I just thought if the government was handing me money, someone would have to profit from it, and it would be the doctors so I’d have to go to the doctor regularly and often. And I really don’t want to do that. If I could be guaranteed to get a GOOD doctor who wouldn’t automatically want me to be on meds for every possible mental problem (that I probably didn’t even have) and would listen to me, I would much rather try to work through everything than to automatically apply for government money. (Actually a doctor that I would even be able to talk to would probably be impossible to find.) I just figured I wouldn’t have a choice if I said I didn’t want to be on medications. Social anxiety is the biggest problem. But a lot of anxiety also comes from never working. But then I think maybe it is 100 times worse for a lot of other people. And I’m just making problems out of nothing. Everyone says “I should be living my life” but if I can’t get a job and I didn’t have to feel guilty about it, I would prefer to sit and read my books and listen to music. But I don’t know if that is anxiety and depression talking or if it is what I truly want to do.
        I know I shouldn’t be dumping all this on you, I’m sorry (and it seems to go along with what you said in your original post about not wanting to deal with a person standing in the snow who can only move if a friend shows up to listen to them, but in this case I am a complete stranger to you, which I suppose makes it worse.) I don’t know you personally, but maybe with a response like the one above you had to my first message, despite you not liking to deal with the problems of other people, maybe you are just very good at it. Even at least the listening and responding parts? I didn’t expect a response at all, let alone as in depth as that one. I really appreciate it. So maybe the people who know you personally are used to you thinking about things so well? Everything you said in that last post was unknown to me, so it was very helpful!

        1. when i first started seeing a therapist & all that stuff, i lived in massachusetts & enrolled in their low-income state insurance program. it was called free care back then, & it was free. i didn’t have any income at all then, so i was approved automatically. two years after i went on disability, i was automatically enrolled in medicare, as are all disability recipients that don’t pay out of pocket for private insurance. because disability is a federal program, the federal health insurance trumped the state insurance…which kind of sucked, because i wasn’t paying anything for state insurance, but medicare premiums are automatically deducted from my monthly check. plus the free insurance covered all of my medical care with no co-pays for me (including dental), but medicare doesn’t cover as much stuff, & i do have to pay co-pays. & i have to pay for dental & eye care 100% out of pocket. there are different medicare program you can enroll in, some of which cover things like dental, but you have to pay extra premiums. ditto on prescription drug coverage. i opted to stick with the basic medicare program since i am not taking any prescription medications right now anyway, & i hate going to the dentist, so i only do it in emergencies (like once every five years).

          every state low-income health insurance program is different. i was lucky that massachusetts’s program at the time (they’ve since overhauled it & now patients cover more of the costs themselves) was really good for a person without any income. i live in kansas now & their state insurance is more expensive. but it doesn’t matter for me, because i am covered by medicare regardless of what state i live in.

          no one really profits from someone being on disability. it’s basically a social welfare program, enabling people who can’t support themselves to be able to live independently. it’s facilitated by the social security administration. social security is also a social welfare program. when people retire & meet the age requirement (i think it’s 67 right now), they become eligible to receive monthly social security payments, which help older people meet their financial needs without relying on money they saved up while they were in the labor force, & without having to work until they die. the disability program is the same idea, but for people who can’t work due to their disabilities.

          like i said, having a doctor vouch for your disabled status goes a long way in your application process, but if you can independently convince a judge that you are disabled, they can approve you, & there are no requirements for taking medication or receiving medical care once you’re in the program. again, your case may always come up for review, at any moment. supposedly they review everyone every five years, but i have found that’s not really true. i’ve been reviewed twice in the last six years & i have a friend who’s been on disability for like fifteen years & never been reviewed. in the event of a review, they will request letters from any doctors you are seeing for issues related to your disability, & they send you a questionnaire to give to the doctors to fill out. it’s uncommon for someone who is on disability to booted off during a review (unless you were approved for a temporarily disabling condition that they expect to improve, like if you break your leg & can’t do your construction work job for a few months), but having doctors vouch for you strengthens your case & provides peace of mind.

          & i can’t stress enough that if you do decide to seek out some kind of medical care, you are under no obligation to continue seeing a doctor who is trying to force treatments on you that you don’t want. i got a referral to an orthopedist shortly after i moved to lawrence, because my chronic pain was becoming worse than ever. when i saw her, i felt that she was somewhat dismissive of my issues during the exam. she referred me for some bloodwork & x-rays, but wouldn’t tell me what she was looking for because she “didn’t want to scare [me].” she didn’t want me looking up the tests on the internet & getting freaked out. but i’m not an idiot, i’m an arthritis patient, & i’d like to see the arthritis patient that can’t figure out what an RA test is. she was obviously testing me for rheumatoid disease (i’m diagnosed with osteoarthritis, which is a degenerative joint condition; rheumatism is an immune disorder that attacks the soft tissue surrounding the joints, & is often called rheumatoid arthritis–both are incurable & cause chronic joint pain, but rheumatism is also associated with an increased risk of heart failure & a suppressed immune system, obviously). when the bloodwork came back inconclusive for rheumatism, she had her nurse call me to recommend water aerobics classes to strengthen the muscles around my joints, & she prescribed a full dose of acetaminophen three times a day. every day. for the rest of my life. she did not bother to inform me that that kind of high level of acetaminophen can cause liver failure. the overwhelming majority of americans waiting for liver transplants got there by ODing on over-the-counter painkillers. i learned that on my own, & i have not followed her recommendations for daily dosing. i just take over-the-counter pills when the pain is especially strong. i will NOT be seeing that orthopedist again…but it’s frustrating, because to get a referral to another specialist, i have to find a primary care physician to write the referral, & it has to be a specialist who will accept medicare (some don’t). i decided to stop seeing my primary care doctor in lawrence for unrelated reasons, so i’m back to square one in terms of arthritis care in lawrence. it’s not a huge deal right now, because i know i have arthritis & i know there’s no special treatment i could be receiving from a doctor for that anyway. it just complicates my life a little bit more whenever i do decide to get medical care (like, whenever i decide to have a kid & need to find an obstetrician or nurse-midwife). but i’ll cross that bridge when i come to it.

          i would recommend talking to a doctor if you have some kind of health care right now. better to test the waters now than down the line when figuring out insurance & all that stuff is more complicated. talking to a doctor doesn’t mean you are automatically agreeing to any kind of treatment plan or permanent doctor-patient relationship. i find it’s usually a lot less nerve-racking to see what happens than to sit around worrying about what MIGHT happen.

          it’s not that i dislike helping people with their problems, full stop. every therapist i’ve ever had has been bowled over at some point or another & tried to convince me that i would make an awesome therapist. i do like helping my friends (& sometimes strangers) out with their problems, especially when i know i have some specialized info that i think could apply to their situations. but i’d ultimately be a terrible therapist because i HATE it when people complain & complain & get my advice & then don’t try to do what i suggest. & A LOT of people would rather complain & feel sorry for themselves than ever try to change their shitty situations. THAT is what i hate. i don’t mind a little venting every now & again, but there’s a limit to my patience when people start veering into self-pity territory. & it’s just a hop, skip, & a jump from self-pity to emotional manipulation, which i REALLY hate.

  9. Does convincing a judge mean going to court? And when they review my case do I have to go back to court every time? You say I wouldn’t need to get medical care if I’m on disability but if the court sends a questionnaire for the doctor to fill out, doesn’t that mean I have to go to the doctor anyway? I might have the choice not to take medications, but not if my parents have a say in it. Which I figure they do, since they’ve been feeding me all these years.. I live in NY state so I’m sure the insurance and disability programs are especially horrible. I shouldn’t worry so much, but that is what I do I guess. And that was what I was thinking as well, that you would be the perfect therapist. But I understand what you mean when you say you’d hate being a therapist. thanks again for the response and I hope you feel as well as you possibly can.

    1. whether or not you have to go to court depends on your case. you do not have to go to court during the initial application process. if your first application is denied & you decide to appeal, there may be more red tape to navigate, which may involve a court appointment. more likely, you would have to meet with a social security employee, do an interview (which you may be able to arrange to do on the phone), etc.

      when the social security people send questionnaires for your doctors, & you don’t have doctors, obviously you don’t have anyone to fill out those questionnaires, so you don’t have to return them. you just have to return as much of the paperwork as you can–your own questionnaires & forms, & whatever you can get from a doctor supportive of your disability status. even a primary care physician (as opposed to a therapist or mental health specialist) can fill out the doctor questionnaires. or not, if you don’t have one.

      i would advise against deciding that your state insurance programs are terrible before investigating them. my understanding is that new york state is actually fairly progressive in terms of health care.

      obviously also your parents don’t have any legal say over what your treatment plan is like just because they pay your bills.

      1. I don’t have bills.. I just eat. I’m thrifty. haha. But everything you’ve said (and the link) is extremely helpful and I will keep everything you’ve said in mind. thank you!

    2. I was initially denied & at the end of the appeals process I had to go before a judge. In my case it did not involve a courtroom, it was just a judge in a suit (no robes, no gavel) in a conference room at the federal building. I used a free Legal Aid attorney & at the time I was seeing a fantastic therapist, so they represented me. I was such a mess I couldn’t even speak so the judge took pity on me & told me to wait outside.
      I was in my 20s at the time & still being supported by my mom, but the only involvement she had with my case was a letter she wrote explaining why she was supporting me & why she could not continue to do so. They did not require her to fill out any paperwork or otherwise defer to her for anything.

      I have been on SSI for at least 15 years, most of that time without therapy &/or medication, and I have yet to experience a review of my case such as Ciara has. I live in fear of that every day, however.

      As overwhelming as it is, the worst thing you can do for yourself is give up without even trying. Trust me, I returned many a mangled form because I was so stressed out & frustrated with the whole process.

  10. TY for this post. I have been dragging my feet about applying for SSI because I was told several times by my psychiatrists & social workers that I probably won’t be approved for SSI because: 1) my labile affect had improved in the year since my hospitalization/release and maybe I ought to have applied for it right after I was released; and 2) my problems are “treatable”. I had always planned to have notes from my social workers and psychiatrists (who cheerfully offered to write them!) but finding out that the government (and apparently the very people that are “helping” me!) does almost everything in their power to discourage you from applying has fired me up to apply very soon.

  11. I came across this tonight and although I am late to the party, I had to post.

    I am in a very similar situation: disabled (also in the disabled adult child program), in chronic pain and dealing with situational depression. The main problem here is your friend is truly ignorant. Ignorant of how hard being chronically ill, ignorant of how ill you have to be to be approved for social security disability, and, most importantly, ignorant of your feelings.

    I would love to be healthy and have all the choices your friend has at her disposal.

    I hope that the author is doing well.


    1. the author is me & i am doing quite well. i’m not friends with the person i wrote about here anymore. haven’t been for a long time. we tried to patching things up a few months after this incident took place, but it didn’t stick.

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