Tag Archives: social security disability insurance

The Reality of Mental Illness

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I was diagnosed with schizophrenia and major depression when I was 20 years old. I was covered under my parents’ insurance plan for psych meds. At the age of 25 I applied for social security disability insurance because I was no longer covered under my parents’ insurance and it was painfully obvious I couldn’t handle the anxiety of jobs available (i.e. retail and customer service jobs). My psych meds, without insurance, were $2,000 a month in 2006. To offset this, my parents bought a high risk health insurance policy for me that, to this day, they still refuse to tell me how much it cost them. I didn’t qualify for social security disability insurance until late 2008.

To avoid getting thrown out of the system, I couldn’t make more then $700 a month (after taxes) at any job. I had a janitorial job for a few years that I did well in because I wasn’t around people most of the time. After four years on the job, I finally did the math and figured out that for every one dollar I made in work, I lost 72 cents via increased rent (I live in low income housing), decreased benefits, and taxes. I finally gave up on the job because there was no incentive to keep working at what was effectively a 72 percent tax on a minimum wage job.

I am now 40 years old. Haven’t held a traditional job for eight years due to loss in benefits. I still need the psych meds every day or I would be homeless, in prison, or dead. We don’t even have long term mental health hospitals in large numbers anymore in the US. And if I want to save money in case of emergencies, I’d lose benefits if I ever had more than $3,000 in savings. This is all for a chronic mental illness that I didn’t bring upon myself. I was an honor student in high school who qualified for a $5,000 a year scholarship for college. I was studying to get into medical school. Lost most of my friends, most of my support group, any chance at a family, any shot at a career, etc. so I could keep the insurance for psych meds and treatments that would now, in 2021, cost $4,000 a month. And I receive zero dollars in food stamps. The support of my understanding and upper middle class family during the two plus years I was waiting for disability to get approved (which was faster than normal because we hired an attorney) is the only thing keeping from going bankrupt and homeless. So my case with severe mental illness is actually better than most people in the US. As it is I live on my own in low income housing in a small town in the Midwest and can live independently off my disability pension because I have no debt. Most people in my circumstances are far worse off.

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My Journey To Being An Advocate For The Mentally Ill

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My birthday is coming up in a few days.  I’ll be 37 years old this year.  That would have made me a senior citizen in the Stone Age.  Of course if I would have developed schizophrenia at most points in human history, it probably would have been a death sentence.  As it is I have found what works and what doesn’t in my life with mental illness.

I was first diagnosed with schizophrenia and major depression in the autumn of 2000.  I was in the second year of my pre med studies in college.  Even though I had been having problems with depression and anxiety for a few years before, I was still able to do well in school and keep up a strong front.  I still don’t know how I did it.  But in my second year of college, it all collapsed.  I couldn’t handle stress anymore.  I was having constant panic attacks.  I would have breakdowns where I called home and yelled at my parents at least once a week.  Looking back on it, I should have gone to the mental hospital right then and there and not tried to gut out college at the same time.  As it was I withdrew from college at midterm of the spring semester and took a few months to adjust the treatments and pull myself together.  After the disaster that my second year of college was, I knew I’d never get into any med school with my grades.  So I switched over to business because, let’s face it, everything involves money and commerce.  I still thought I could be employable in the right situation after college.

During the last few years of college I became interested in economics and finance.  I applied for several jobs like financial planner, insurance sales, insurance underwriter, loan officer at a few banks, etc.  I took the obsession I previously had with science and was able to transfer it to business and economics.  It paid off to be curious for me.  I graduated in spring 2004 but, like many college seniors, I had several job interviews but no offers when I left school.  I didn’t realize just how common that was until I started talking to people over the internet a few years later.

After a few failed attempts at careers in various fields, (retail sales, academia, manufacturing), I applied for disability insurance.  This was in 2006.  I had just lost my job at the university and been forced to leave the masters’ program.  Here I was on a waiting list for disability, on a waiting list for low income housing, with no job, no confidence, and no money.  If it wasn’t for my parents help for the first half of 2006, I would have never made rent on my apartment.  But that wasn’t all for 2006.  My longtime college girlfriend and I broke up and I failed at a couple minimum wage jobs, one of which was at Goodwill.  If you can’t succeed at Goodwill, then you are really screwed up (or so I thought).  In the late summer I checked myself into the mental health hospital.  Stayed there for a week.  By this time I was at my lowest ebb.  I had no job.  My illness wasn’t allowing me to hold a job.  I had no real income.  I was living off food stamps though no mess ups of my own.  I had no idea when social security was coming through. I was on high risk insurance that was costing my parents a lot of money so I could stay on my meds.  I never could have afforded them on my own.  I came to the conclusion I would never hold a career because of my mental illness.  I came to the second conclusion that I would never marry and have a family because of my mental illness.  I was really sad and depressed during this entire time.  I really thought I’d never be happy or amount to anything ever again.  I’m glad I didn’t cross the line into becoming suicidal at this time.

Those rough years of my mid to late twenties when I came to the conclusions I would never hold meaningful employment or have a family really sucked.  But they were also when I was writing a lot, granted not as focused as I am now.  Before I got serious about my blog I wrote hundreds of poems, largely in the style of Robert Frost, Walt Whitman, and Emily Dickinson, and I also did complete rough drafts for two novels.  The novels were nothing really special, just kind of like Jack Kerouac for Millennials.  I was working on notes for a science fiction novel at this time too.  I also read every day to try to help me find a literary voice.  I read dozens of authors, ranging from Kurt Vonnegut to Ayn Rand, Chuck Philhanuak to John Grisham, Alexandre Dumas to Mark Twain, Adam Smith to Nietcheze, etc.  I tried to teach myself Spanish at the time as well, but the only Spanish I know is how to ask for directions and order simple meals.  But as my ‘traditional’ side was falling apart, I was finding other ways to find meaning in my life besides work and dating.

I started writing down my thoughts and experiences with mental illness in my late twenties.  I was submitting some of my poems to be published in literary magazines.  I got a few of them published but never made any money.  I eventually wrote a few dozen short essays about life with a mental illness.  I was reading The Federalist Papers at the time and kind of modeled the book of mental health essays on that.  I put the files on a print on demand service.  I sold a few dozen of those books, mostly to friends, family, and interested mental health facilities.  After tasting a little success with those essays, I thought they might make good blog entries.  And my first few blog entries were from that original book.  Since it’s been several years since I updated that book, I probably ought to rewrite it and repost it.  And since I now have a dozens of blog entries on the subject of living with mental illness, I definitely have new material for another edition.

I started blogging through wordpress in 2012 shortly after I left my last ‘traditional’ job.  I didn’t get much for visitors early on because I had no focus for the blog and I wasn’t posting regularly.  In early 2013 I decided to focus the blog specifically on mental illness.  My audiences have grown slowly but steadily over the last few years.  I started a Facebook page to promote the blog.  I also have a patreon account a few months ago and I already have a sponsor through there.  And I’ve also made a little money since I monetized this blog.  I’m not breaking even yet with what I spent on advertising this blog, but it’s getting closer all the time.  I recently broke 14,000 all time visitors from 100 different countries.  And this is with only four years of work, a microscopic advertising budget, a niche topic, and 50 percent of the world’s population still not online.

I’ll be 37 in a few days.  And I already had a larger reach with my writing works than I ever thought possible when I first seriously started writing in 2004.  That’s been only thirteen years.  I think I’m going to keep at this and see what I can develop with this blog and my writings over the next thirteen years.  I say all of this to point out that young people in their late teens and early twenties shouldn’t sell themselves short at all.  At age 23 I would have been content to be a loan officer at a bank or an insurance salesman.  But I know I wouldn’t have been content doing such work.  I wouldn’t be doing what I’m really good at.  And let’s face it, in this day and age a person can make money doing almost anything thanks to the exposure of the internet if they put in the time and lots of effort to get noticed.  I’ve already accomplished more than I thought I could as a writer thanks to the internet, especially when I started out I was just writing poetry out in notebooks.  And now after running this blog for four years and getting some audience and dozens of positive emails, I know I’m only scratching the surface of what can be done.  I never would have thought this possible when I first applied for disability insurance.  Mental illness is one of the few things that is still discriminated against with little to no protest.  I intend to be part of changing that.  I’m not going away.  The mentally ill bloggers and you tubers aren’t going away either.  We will not be silent and suffer needlessly anymore.  Consider this a declaration of war against mental illness stigma.

 

Debt And Mental Illness

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Managing money is one of those vital survival skills that just isn’t taught in schools in many places.  It certainly wasn’t taught at my school.  My parents taught me how to balance a checkbook and told me to avoid credit cards when I was growing up.  But that was the extent of my money training until I took business classes in college.  I learned to keep track of money pretty well but the idea of avoiding credit card debt wasn’t a lesson that sunk in until I ran up some debts and was in danger of getting behind on payments.  But everyone has to learn on their own time I suppose.

Over the years I learned how to make a budget for things like rent, food, clothes, medications, household supplies, and fuel for my car.  I didn’t get it perfect at first and turned to a credit card to cover the difference.  Big mistake.  Before I knew it I had debts that weren’t getting any smaller even though I never got behind on my payments.  Looking at debts with my only income being my disability pension and a part time minimum wage job scared me.  I knew I couldn’t ask for more hours at work as that would put me in trouble with Social Security’s earning limits.  So I had to drastically cut back on my purchases.  I had to quit going out to eat.  I had to quit going to the mall.  I had to live on cheap groceries (think lots of Ramen noodles, potatoes, baloney, and rice).  I had to cancel my magazine subscriptions.  I had to stop buying books and computer games.  I couldn’t buy new clothes every few months.  I had to limit my driving.  It took a lot of work but I eventually learned to live without going into debt.  I’ve been debt free now for over two years.  And I have less stress because of it.  I am sure some of my mental illness problems were made worse because I was worried about my debts.

If you have a mental illness and your only means of support are disability insurance and or a job, I would highly recommend if you’re going to have a credit card to use it only for emergencies.  I don’t have a credit card anymore as I know myself well enough to not trust myself with one.  Instead I have a small emergency fund I can get to in case of emergencies but I don’t have immediate access to it.  I have it set up I have to have at least twenty four hours to access it as I don’t keep it at my apartment or in my bank.  I budget to where I buy extra non perishable food and fuel my car to full every time I get paid.  I also maintain my car and don’t run it hard so I don’t have to make expensive repairs.  I have learned how to have a good time with friends, family, and by myself without spending much money.  I probably will never have much for money but I really don’t spend a lot to begin with.  Having no debts and having an emergency fund are the best sleep aides and stress busters I have found.  I don’t make much but I don’t worry because I don’t have to make payments to anyone.  If you are on disability or have a limited income, I highly recommend getting out of debt and staying out.

Budgeting While On Disability

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Bought groceries and supplies today.  So I’m set for another couple weeks even if it means the money is going to be tight for awhile.  Such is expected being on disability insurance and having limited funds to work with.  Being able to budget money is a skill everyone needs.  But it’s vitally important being on disability insurance.  Social Security Disability Insurance isn’t designed to make it’s recipients wealthy.  It is usually enough to get you by if you do a little planning and budgeting.

Every time I’m out shopping I hunt for sales and discounts.  I also have a rewards card (not a credit card) through one of the regional grocery store chains that gives discounts on gasoline purchases.  I have planned to where I usually get a 50 cent per gallon discount when I buy fuel.  As I don’t have a SUV or a pickup truck I can usually get by pretty inexpensive with gas.  I had a Ford Explorer for a few years but decided to trade it off once gas got more expensive.  It was good for hauling things around and I even made a little money hauling things around for friends and neighbors.  But it was an excessive expense that wasn’t worth it anymore, at least not for me.  Other luxury things I cut down on was eating out.  I was appalled how much money I was spending on eating out once I sat down and did budgets and reviewed my spending.  I probably eat out now only once a week on average.  And I found out I was a decent cook.  I’m especially good at grilling as I have one of those electric grills that I do almost all my meals on.

I also shop at discount stores, Goodwill (but I don’t buy furniture from Goodwill as I’m concerned about bed bugs), and Salvation Army. I buy most of my clothes out of season when they are on clearance.  You can find some good deals doing this.  I don’t use coupons as much as I should.  I don’t subscribe to any newspapers or magazines so I don’t get much for coupons.  But I still find deals.

Another key to living on disability insurance is staying out of debt.  Those credit card payments with interest are killers, especially on a fixed income.  All I can say if you are on disability insurance and in debt is find a way to pay those debts off.  I had some debts I could have easily gotten in trouble with.  You may have to ask for help.  You may have to negotiate with your creditors and work out some kind of deal.  You might even get some of your debts forgiven if you keep lines of communication open.  Do not avoid collections.  But do remain calm if collection agents harass you.  Getting out of debt sucks but it is more than worth it once you’re no longer making payments.

Shopping at discount stores, looking for sales, using incentive programs, and staying out of debt are vital for anyone living on fixed income.  I had friends who filed for bankruptcy. I saw how much pain and stress it caused them.  After seeing this I vowed I wouldn’t let it happen to me if I could avoid it.  I don’t have much of a margin of error with as little as I earn.  Since I don’t make much money I have to be real wise with money.  I have to control expenses.

 

 

Thoughts on Employment and Education Options While On Disability

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I live in a small town that hosts a small state university.  School began for the fall session earlier this week.  Even though I haven’t been enrolled as a student at any school for ten years I still enjoy it when the college kids start back.  Since a significant percentage of my town is either enrolled at the college or works for the college, the town is really quiet, almost dead, for most of mid May to late August.

I went to the campus last weekend for the welcome back street fair.  Got some cool freebies and got to see that practically every student organization, fraternity, academic department, and interest group had a booth and was represented.  Surprisingly I got a lot of freebie handout coupons that we exclusively for students.  Now I’m in my mid 30s so I was quite surprised that I got these deals in spite my obviously not being a student.  But I was getting carded every time I went to a pub to see a concert well into my 30s except for a few times when I had a full beard.  I didn’t think I looked that youthful.  There are days I certainly don’t feel it.  But I wasn’t about to pass up free giveaways.

While I was at this street fair I couldn’t help but think ‘Do this kids really know what’s going on in the world off campus’ and ‘What will these kids be doing ten to fifteen years from now.’  In my case when I went to college back in the pre wireless internet days of 1999, I really didn’t pay that much attention to the world outside the ivy walls of my Christian college.  Like most naive college freshmen I thought that I would get my degree and then do well in the workplace.  Little did I realize that unless you’re majoring in a STEM (Science, Technology, Engineering, Math) field or went to a two year school for a specific trade, college cannot teach you what you need to know for a work place.  Even my friend the high school teacher told me that little of what he learned in his teacher education classes helped him much.  He said concentrating on his subject matter (history and social sciences) and student teaching helped him more than anything he learned in any classroom.

My problem was while I did well in the classroom, I couldn’t make the transition to the real world of work because of my inability to work through stress, crippling anxiety (I literally used to vomit from panic attacks before I went to work even as a minimum wage retail clerk),  inability to read people, and inability to work around office politics.  Would have been good to known this before I sunk five years of my life into college for a degree I would never use in any way, shape, or form.  I am very fortunate to have escaped college debt free.  Most of my classmates weren’t so lucky.  As much as I enjoyed college I would have been far better off going to a two year trade school to learn something like computer networking, web page design, or computer coding.  I would love to go back to school to learn any and all of these three things, but with being on disability insurance I don’t see how that is possible without losing Medicaid.  As it is, my medications cost over $2,000 a month without insurance.  The only way I could go without medications and not be a danger to myself and others is through long term hospitalization.  That’s not really an option as many long term care hospitals have been shut down over the years due to budget cuts and a general move away from institutionalization of mental health patients.

I would love to get into some computer related field, namely webpage design or computer networking.  If there is a way to learn this without getting thrown off the Medicaid entirely I would love to know how.  I’d probably have to do free online classes (if those are recognized by potential employers) as what I make is below poverty level.  I’m tired of being on disability and having to let my mind go to waste.  If anyone from Social Security Disability is reading, you guys are really missing out if you aren’t encouraging people into online studying for jobs that don’t require traditional education.  Besides most jobs do not require a four year degree if it wasn’t for the artificial barrier to entry it created.  Most employers I talked to said that most jobs could be learned with a year of intense on the job training or less.  If the U.S. Air Force can turn recruits into great pilots in less than two years, then it realistically doesn’t take four years of college to learn data entry or any other entry level office job.

In closing I want to work, especially at something like web page design.  I am definitely open to the idea of working from home (commuting even five minutes to my old courthouse job got old), would prefer it actually.  I don’t want to spend the rest of my life on disability and squander my mind and creativity.  And I think it’s insane that we, at least here in the USA, have a disability system that makes it confusing, frustrating, and almost impossible to return to productive work without a mountain of paper work and a maze of hoops to jump through.  It shouldn’t take acts of Congress and God both to return people who want to work back.  And frying chicken at KFC for minimum wage is not a viable career option for thirty to forty years of a working life.

Why I Actually Like Being An Adult, Disability Insurance, and Other Side Rants

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When I was growing up and going through middle school in the early 1990s (back in the dark ages before we had internet in every house, restaurant, laundromat, etc.), I had this teacher who loved to tell us about the dreaded ‘cold cruel world’ and how much being an adult was going to suck.  As a naive thirteen year old growing up in the farm belt of rural Nebraska (I lived at least 65 miles from the nearest Wal-Mart), I was by no means wise to the ways of the world.  We didn’t even get cable tv in my town until the late 1980s, so all I got to see of the outside world back then was what Ted Turner chose to show us on CNN every night.  As a child I was only vaguely aware there was a world outside of Nebraska and that people went to college for things other than becoming doctors, teachers, and lawyers.  But practically everyone else I ever knew were farmers and had no real need for any real ‘formal education.’  So naturally I blew off my teacher telling me how lousy being an adult was because, quite frankly, my hometown had nothing to offer someone with my natural talents and abilities.  I didn’t complain, I didn’t try to dispute my elders when they warned me ‘wait until you have kids’ or ‘wait until you have a job you hate’ or ‘wait until you have to pay taxes.’  I didn’t complain or dispute because 1) I was just a kid and what do kids know and 2) Starting about age 12 I looked all around me and saw many adults who literally could not think for themselves or long termed.  I saw many adults who complained about living in a rural area, complained about work, complained about their spouses, complained about how their kids acted, complained about the weather (quite common among farmers), complained about politicians, etc. but I never once saw any adult try to do anything to change their situations or improve themselves.  Once, being the curious child I was, I actually asked one of these wise adults why no one tried to do anything to change things.  The angered look on this grown up’s face made me think I had committed some form of blasphemy like saying the Ten Commandments were a lousy idea.  After that I made it a point to never to question an authority figure so blatantly.

Putting all of these observations together I became convinced that I probably wouldn’t like being an adult was as grumpy and unthinking that many of the adults I saw.  But, I also hated being a kid.  Oh did I ever hate it.  I was constantly bullied for being smart and different.  My teachers often didn’t like me because I often could find easier ways to solving problems then what they were teaching us.  My football coaches didn’t like that I wasn’t Joe Rah-Rah.  I didn’t have many friends because I just didn’t ‘go along to get along.’  And I didn’t like the fact that, as a kid, no one took my complaints and problems seriously.  When I said I wasn’t being challenged in school, I was told I had a problem with authority.  When I didn’t bring home straight A’s, I was told I was an underachiever.  I wasn’t told that no one in the work world cared to see your high school report cards.  And I certainly wasn’t told that adults are often as clueless as kids about what’s really going on and what they want out of life.  The adults were just better at hiding it and lying to themselves.

Eventually, like all nightmares, my time as a kid ended.  I went on to college.  While I didn’t leave Nebraska or find the college campus to be completely full of people just as smart and quirky as I was (thank you for getting my hopes up, college recruiters), I did meet some cool and stimulating people.  As it was a small college with people from all over the world as well as the United States in very close proximity, it was quite easy to socialize with many people with different backgrounds.  It was also not so big of a college that international students, in state students, city kids, farm kids, etc. could get by with just socializing with people like them.  To have any hope of a social life a person would have to socialize with many different people.  Leave your biases and stereotypes at the door, I suppose.  I met most of the people I have kept as friends to this day at college.  I learned a good deal about business, economics, personal finance, accounting, writing, etc. that, in all honesty, I should have ideally been taught in college.  I discussed this in an earlier post.

Yet, as much as I liked college, I came to find I enjoyed being an adult even more.  As an adult, you can choose were you want to work.  As a kid, your parents or the local government chooses where you go to school.  We had only one school in our town, the nearest private school was over 65 miles away, and most of the schools within a 50 mile radius were exactly the same as mine.  Home schooling wasn’t really popular back then. My best friend, and occasional dating interest was homeschooled until high school.  Kind of funny, though, when she entered high school the school wanted to put her in remedial education and she wound up being an honor student within a few months.  And for those who say that ‘home school kids have no social skills even if they are book smart’, I will say that two of my best and most stable friends came from home school environments.  But maybe because these two were so well read and treated a nerdy outcast like myself so well makes them ‘have no social skills.’  I couldn’t leave the school I was in.  My family would not have liked having someone with a GED in their family.  It is far easier for me as a grown up to leave a job where the boss and I don’t mesh or if I don’t like that my coworkers hardly work and don’t care about the customers.

Other things that are cool about being an adult is I get to do cool things like vote, set up my own schedules, read whatever I wan to read, watch whatever educational videos I want, make whatever friends I want without family pressures or social limitations, write my own blogs (we didn’t even have blogging back in the mid 1990s as there was no easy access to internet), I don’t have to date if I don’t want to (whereas in high school I was often ridiculed because I couldn’t get a girl to date me besides my homeschool friend, and even then I was still ridiculed because she came from the proverbial ‘wrong side of the tracks’), I can form my own beliefs and don’t have to really fear if I share these beliefs or not, I don’t have to think anything I don’t believe or lie just to impress some authority figure who supposedly is wiser than me because he’s old and has more money and prestige.  Shoot, I don’t even have to work if I don’t want to.

One thing I would have loved to have known about applying for Disability Insurance was, if I filed before my 22nd birthday, I would have had my monthly benefits determined by my parents’ income.  I was diagnosed as paranoid schizophrenia at age 20, graduated college at age 23, but didn’t file for disability before until age 25.  Financially I shot myself in the foot because I didn’t apply for disability before age 22 since both of my parents were medical professionals.  I would be making much more than I am now had I not tried the John Wayne gut it out until it was obvious the cause was lost routine.  Yet that is in the past.  I still do well because I can choose to live a minimalist style of life as a single adult.

Even though I was set back for several years because I tried to work and be a productive citizen by not dropping out of college and applying for disability at a younger age, I am still free to make the choices in lifestyle to adjust accordingly.  Yes it was hard to learn to live below what most Americans would consider poverty level and I did make some mistakes along the way.  But I learned from those mistakes and adjusted my game plans and lifestyle accordingly.

To be quite honest, I don’t know many people besides myself who can live on less than $15,000 per year, which is $125o per month.  At the average American hourly wage of approximately $13 per hour, that’s only 20 hours of work per week.  I make even less than $1250 a month and I live quite well, especially since I’m debt free.  Some may disdain me for ‘being on the dole’ and say ‘you just live off the government.’  But, you know what, had I never become mentally ill I would have achieved my dream of going into medical research, would probably be making six figures by now, would have gotten married, had kids, owned a McMansion, and been one of those ‘respectable’ types that pays more in taxes than most people.  Not everyone on disability got there because they are lazy and want a free ride.  Believe it or not, there are a few of us who got there because of things we couldn’t control.  Maybe people like me who are smart and on disability in spite doing all the right things are as rare as unicorns but we still exist.  Another great thing about being an adult is I don’t have to try to please people who think I am a leech and lazy for receiving disability.  I hate being on disability, God do I hate it.  But that is essentially the only option for people with mental illnesses in my situation besides homelessness or prison.

In closing, I know this post and rant was quite long winded and had a bit of a sharper edge to it than my regular posts.  For this I don’t apologize because, as an adult without an employer, family, or a social circle I didn’t choose, I really don’t have to apologize for speaking the truth.  As an adult I have far more choices and control of my own life.  That alone is reason enough why I actually like being an adult.