Tag Archives: SSDI

Catching Up; The SSDI Denial

At this point, more than one curious person has asked me about my attempt in applying for SSDI (Social Security Disability Insurance) and to be totally honest, it is something I have been trying to write about for a few months now.

I received my denial letter a couple months ago (I submit my application in December 2012) and after all the time that has passed I was overjoyed to receive this denial letter.

The reason I was overjoyed to be denied was because my path through the application process was neither easy or uplifting, to say the least!

My first hurdle was working with a team of lawyers who told me appear and act a certain way. They strongly suggested I give up this blog completely, which I was very uncomfortable with. On one hand, I wanted to win, but I truly believe (as do my family, friends, and doctors) that anyone who understands my symptoms and has seen me interact with others would not doubt my claim that I am unable to hold a full time job. It was important to me through this whole process to hold onto that and to be ok if things didn’t work out (because I had been honest the whole time), but it was very difficult to feel manipulation and pressure by my lawyers who were advising me to do things that would undermine many of the things that keep me afloat enough to survive (blogging, therapy, spending time with other people, etc).

The second hurdle was the judge I was assigned for my hearing back in February 2014. Apparently different judges who are making the decision regarding SSDI claims have different political affiliations, different beliefs about the way SSDI should be structured, and different viewpoints on the topic of mental illness (among other things). I was told my judge was the toughest in the county and to expect that I had a chance of about zero. While I expected that walking in, what I didn’t expect was the way the judge treated me in the hearing.

On one hand I could understand that it was the last hearing of the week on a Friday afternoon, and that maybe he’d had a bad cup of coffee earlier or was anxious to get home… but I was not prepared to be verbally abused in the courtroom. For the next couple months I became psychotic, trapped in my mind where this judge was constantly attacking me. I was so distraught that I consented to try Seroquel again.

The third hurdle was a full investigation of me, as prompted by the judge and federal government. The investigation happened when I was (naturally) experiencing a hypomanic period, seemingly corroborating the theory that the judge had that I was attempting to commit SSDI fraud. Detectives posed as Seattle Police officers to gain entry to my apartment where my fear of the SPD kept me from mentioning anything regarding my own mental health -again seemingly corroborating the theory that I was faking it.

When I received a copy of their report in the mail (along with notations of voice recordings, notes from being tailed for a week, and copies of blog entries I had made that were taken out of context) I began to nosedive into a second psychotic tailspin. The men who were agents for the government had spoken to my landlord, neighbors, even people in a weaving group I had no longer been part of for over a year -all about my mental health. The paranoia became overwhelming, and I could no longer feel comfortable in my apartment knowing that space had been violated… so we moved.

It might not seem like such a surprise now that I was hospitalized around Halloween last year. I could hardly even talk to my grandmother on the telephone for fear that they were listening to me, let alone send emails or write in this blog. My lawyers told me not to talk about it, so I relied heavily on Corey (my boyfriend), my therapist, and my psychiatrist. I provided my healthcare team with copies of the paperwork I had been sent about what happened and they were both horrified and flabbergasted, but ultimately they had proof that I was telling the truth and could corroborate that the situation had triggered the symptoms I was having.

The final hurdle was a second hearing, scheduled to address the findings of the undercover investigation against me. Initially the hearing was scheduled to take place the same week as my birthday in November 2014 but was cancelled by the judge and rescheduled for April 2015 (the same week as Corey & my anniversary… lame!).

For many months it had been clear I wasn’t going to win, I just wanted the inquiries and fear to end. Honestly I expected the judge to berate me further in the hearing, but to my astonishment he was much more polite (my lawyer said that was likely because of the documentation of his actions directly leading to my most recent hospitalization in my file). After the back and forth with my lawyer he simply looked at me and said my file was inconclusive because of how inconsistent everything was, from the notes from my healthcare team, to my work history, to the report from the detectives, etc.

This was the one small window I was waiting for. For the first time I was able to do what I do best; relate my symptoms and experience with someone else in a way they can understand. I told the judge that inconsistency is the very nature of my disability… that I can be simultaneously the best and worst employee you’ve ever had, and that it feels impossible to remain consistent when I might have strong feelings of joy one minute and intense feelings of despair or fear the next. Most of my employers have considered having an unreliable employee worse than a mediocre one, so that inconsistency has been a huge hurdle in trying to remain employed.

He looked admittedly thoughtful and said he would reconsider the evidence. This, if nothing else, helped me shake off the fear and paranoia that had accumulated the past couple years. It was the first opportunity I had to defend myself and my life and my reason for applying, and even if I was denied benefits at that point I was simply happy to be rid of the specter that had been haunting me.

Several months later I received my denial. I am happy because it means I am free. I am no longer worried that the government is watching me (though who knows), and though I might not be able to take care of myself financially, I do have, however briefly, (heh) my sanity.

Typically I pride myself on being open about my life and my emotions, and I genuinely went into this SSDI application situation with the intention of writing about it every step of the way. The whole experience was much different than I expected, despite knowing I would be at a disadvantage because of my age and my disability being a mental disability as opposed to a physical one.

While not having benefits means I am in a difficult spot financially, I have proven the last five years that there are many organizations willing to help support those with mental illness who do not make the applicants sing and dance, or trigger extreme worsening of their symptoms before they are willing to help. While the point of this post isn’t to shake my fist at the government or attempt to bring shame on those involved, I can’t help but question this system after I have experienced it firsthand.

Of course, this comes with my usual reminder that this was a situation that happened to me. While I have heard many accounts of people in my local support groups achieving SSDI benefits, I haven’t heard many stories like mine… and though I don’t know if they’re out there, I wouldn’t be surprised if people aren’t completely terrified to share them (I sure was!). This is not the inevitable end of every SSDI application, just one, and to me it seems like one worth pondering.

Ultimately, being under the scrutiny of the federal government was one of the least fun adventures I’ve ever had in my life…

I’ve never been so happy to be denied something before!

I do not intend to reapply any time in the immediate future because, well, I can’t without some kind of proof of my symptoms worsening, for one. Even if I could reapply immediately I don’t think I would, based on how emotionally and mentally overwhelming the whole experience was. I really need some room to breathe in the mental health department, and I have always had the outlook that I do much better when I am poor and slightly more content than when I opt to trade financial stability for increased emotional instability.

The last two years involved the longest periods of psychosis I have ever experienced, so thank you to my friends and family and anyone who was even the least bit supportive in that period (well, and ever). Sometimes it has felt easy for me to believe in the power of the judicial system and “justice” in America, but realistically it is the sense of community in the people that rally around me that have done the most to help keep me going.

So, no SSDI? Ok. I still consider myself to be one very lucky girl!

Advertisements

Support Needed for Mental Illness in the Workplace

Happy Monday! Today I want to share a recent article from USA Today that seems to address some issues I’ve been seeing (and living, let’s face it) about a lack of support around people with mental illness in the workplace.

I’ve been hitting a lot of big roadblocks when it comes to applying for SSDI, and I’ve honestly had some big questions about how our disability system works (or doesn’t work) here in the US. I’ve come across countless people who are against the whole idea of SSDI because it doesn’t support people who are disabled and want to work part time, and the current system seems to only support an “all” or “nothing” style of support. There have been so many situations I’ve found myself in where I know I could mentally benefit from working a few hours a week (giving my life a better sense of structure and a bigger sense of accomplishment and purpose) but the way the system is set up, trying to help myself this way is extremely frowned upon.

The article I’m sharing today addresses the idea of a “supported employment program” that potentially allows employers to do a better job of bridging the gap between the needs of their companies and realistic employment abilities of those with mental illness (which, let’s be honest, can widely vary for any given person over time). Personally, I consider this to be a stellar idea… I am just not sure how well this could realistically be executed. If companies aren’t currently willing to make the necessary accommodations for exceptionally well qualified applicants with mental illness as it is (something I have experienced several times), what would encourage them to use a program like this one?

At any rate, you can check out the article here. Give it a read and let me know what you think!

Can’t Stop a Moving Train

About a year and a half ago a bipolar mixed episode with psychosis and delusions wreaked havoc on my career in the fashion industry. My paranoia spread through the company until it got a grasp on the HR department and sent everyone reeling and investigating one another. It wasn’t until I pulled myself from work (for fear of hurting myself or someone else) and spent over a month in depression before I could see the delusions for what they had really been.

At the time I was extremely frustrated. This sort of thing has happened to me fairly regularly while working, I’ve never been able to hold a job for much longer than a year. My entire healthcare team (my psychiatrist, therapist, etc.) suggested I stop working because the stress of it was potentially triggering episodes far worse than I would normally experience.

I remember falling into this daydream-like state, wondering if I could eliminate all stress from my life (and primarily stress due to working) if things would quiet down. If the episodes would minimize, and I could have a stable-ish (albeit slightly boring) life by simply doing nothing at all.

Seems like a simple enough theory, doesn’t it? Remove all triggers and there is no reason for an episode to happen. I don’t know why I believed a move like this would work; I had seen plenty of people on SSDI at support groups who seemed totally out of control all the time (and they weren’t working either!).

My therapist at the time seemed to believe this would “work” (lessen my general episodes) because she, unlike me, believed all episodes had to be triggered by something. I tried to explain to her that wasn’t how it worked, and that episodes of bipolar disorder often seem to come and go as they please, but we were both too hopeful to pay much mind.

A few months ago I was sitting with her, now over a year since we put this plan into action. It was right around the time after my hearing (February) where I was significantly depressed. After all of the time I had put into applying and waiting for an SSDI decision I sat down in front of her and she said to me,

“You know what I think would help you? Working.”

Completely exasperated, I slapped my hand to my forehead and sighed. We had come full circle. Needless to say, my desire to get a new therapist (I start with someone new tomorrow) had been growing for quite some time.

As it turns out, you can’t just wave your hands and expect to stop a moving train. True, going without working is generally one of the things I attribute to not having been hospitalized lately, but it has honestly (at times) been just as stressful as working would be (with a much lower income).

Last week I managed two or three days of stability in a row, and I found myself thinking how great it would be to start working again, to meet new people, to have a task, and to have a little (as opposed to no) money. I’ve been here before though, I know this charade. I know that when I feel stable I generally feel like I can take on the world without any problems, and the truth of what happens when I do gets pushed to the background.

To top it off, even if I wanted to work (I say “work” but realistically mean roughly 10 hours a week) right now, there are some significant roadblocks. Some, like my social security disability application, I put there myself. I still haven’t received an answer after my hearing in front of the judge in February. My attorney has suggested that working (even 5 hours a week) will often return a negative reply from the government, because working 5 hours a week (and I kid you not) somehow suggests I could potentially work 40.

You can believe that if I could work 40 hours a week without becoming totally delusional, homicidal, and suicidal I would be doing it. I have always been an overachiever, and I’ve had several good positions at some very noteworthy companies (making sometimes incredible amounts of money). Why would I ever stop if I could handle it? Why would I ever give that up to sit in the dark alone, teaching myself to make a proper cream sauce for lack of anything better to do?

Honestly, I also found it a bit of a slap in the face when I met with my social security judge and the “vocational expert” for my hearing suggested I become a hotel maid, or a bottle-capper, or a mail-room clerk (because those jobs couldn’t possibly exacerbate bipolar disorder!). It felt rather humiliating that these “experts” were so quick to throw out the degree that I earned (and am still paying for) and my intelligence or goals or interests, simply because I have a mental illness. My attorney assured them that no matter what job, I am not capable of maintaining it (in my current, still unstable state) which I appreciated, though I still left feeling sour.

The other roadblock is the train itself. I am still looking for ways to help reduce my symptoms of bipolar disorder, and without some kind of useful treatment I am likely to become very volatile very quickly in the workplace. I like to believe (especially when I am feeling good or stable) that I am in control. After 10+ years under that delusion, I understand that there is a lot more to it. It appears that the more stress I experience, the less control I seem to have over myself. While I have been working hard to combat this truth with practically anything I can find, I am still doing so in an environment with the least amount of stress possible.

I’ve had a lot running through my mind. Frankly, I don’t know exactly where I am going to go next, and there are still many things up in the air (my SSDI decision, what my attorney will suggest to do next if it is a “no”, etc.). Right now I am putting all my attention on moving, because if there is one thing I want to get right… that one is it.

Still Waiting for an SSDI Decision

After the SSDI hearing in February (but pre post-hearing mental breakdown) my attorney told me to expect a letter in the mail with a decision in 3-5 weeks.

In the midst of the intensely depressed meltdown that followed, I checked the mail each day (some days twice) in hopes of hearing something. Every day since February 13th I have put my mail key in the mailbox and experienced a panic attack being triggered. The faster I put the key in and open it before closing it again, the more quickly the panic attack ends.

This has been the routine every day (except Sundays, and as I mentioned, some days twice because the mail didn’t come on time) for nine weeks now.

The intense depression dissipated. The notion that my life would end if I wasn’t awarded SSDI has passed. I’ve formulated a new future in my mind, a future where I don’t have the things that I wanted… and that is ok with me now. I know that leaving my home and having to find a new one farther away from the city is part of that future, but in the last couple weeks (without the depression) it doesn’t feel like the burden it felt like before.

I am no stranger to a sense of paranoia, of distrust, and I admit I was beginning to become suspicious of my mailman. After all, he works so inconsistently… what if he lost my decision letter? What if he was sitting in his little white hatch-back eating fried chicken reading it? I know. But that is where my mind goes!

Two weeks ago someone (Corey? A friend? My sister? I don’t recall) suggested I call my attorney’s office to see if they had any news. I agreed this was a great idea, but was so hypomanic all this time the days kept slipping past, faster and faster, and I forgot (several times).

When I made up my mind to call the office, I couldn’t remember the name of my case worker. Once I remembered it, I couldn’t remember if I was remembering it correctly, and my fear of phone calls was compounded by the thought that I would call the office and ask for someone that didn’t exist.

I finally made the call on Wednesday. The name I remembered was the right name, but the case worker said it isn’t uncommon for the decision to take this long, if not longer. 

The words she said rung in my ears:

“They haven’t made a decision yet.”

As much as I want to know the conclusion of all this fun I can’t help but feel pleased with the fact that there is still some element of mystery. Mystery in the sense that if they want to approve my claim, take your time! On the other hand, if you want to deny it, do it as soon as humanly possible.

At any rate, I’ve been waiting to go into more detail about the hearing until I received my decision letter… which of course I thought would be sooner rather than later. At this point, if the deep contemplation going on over there has things leaning in any way in my favor, take nine more weeks. I really don’t mind.

Healthcare Held Hostage

I apologize for not posting in the middle of this week, but to be frank… some crazy shit went down.

I got a call on Tuesday from my therapist who told me the clinic I go to was going to allow me to have three more sessions before I was going to be cut off. This would be remedied only in the instance that I sign up for insurance via the (already mentioned in several emails and sessions) Washington state healthcare reform website.

Now, to say I was flabbergasted by this threat would be an understatement. To think that a reputable community resource is no longer allowing sliding scale clients is heartbreaking (at the very best) because it will be putting many homeless, and the remaining uninsured cliental out in the cold. What felt much worse was the way my ongoing mental health treatment (via talk therapy) was being held hostage and would be taken from me if I didn’t comply.

The truth is, I would have signed up for the low-income, no-cost insurance before now if it meant I could continue seeing the psychiatrist I have had for the last 3 years. Unfortunately, his clinic wont take that insurance. By signing up for this insurance I am forfeiting my right to see the team of doctors I want to see, the team I have hand selected over the last four years.

First I cried. I cried and cried. Then, I got angry. I told my therapist, in a nutshell, to fuck off, and that “there are other therapists I could see.”

When it comes to psychiatry and prescribing mental health professionals, this man (my psychiatrist) is the first and only one I’ve ever trusted. When it comes to thinking about my life and the handful of people who have constantly gone out of their way to help me, even when it wasn’t called for (and possibly might even be breaking the rules to do so), this psychiatrist is one of the very few.

So if it was a choice between the two, therapist vs. psychiatrist, I’d side with the psychiatrist any day of the week.

The clincher is that I’m currently able to see my psychiatrist through a charity program at a local hospital. They’ve expressed that they will not be continuing this program for much longer (due to the healthcare reform) so if my coverage ends suddenly, I am without therapy and my prescribing doctor (not to mention my general practitioner and dermatologist).

It seems that my only option at this point is to sign up for one of the plans that are available to me. I’ve been researching for three days and barely feel any closer to figuring out which one… the internet seems to be devoid of information and every phone number I call has an automated message on the other end.

With all of this crammed into my puny mind I made the trek yesterday to what I expect will be my last appointment with my current (or ex-current now) psychiatrist.

I stepped into his office crying and on the verge of a panic attack. Within minutes he had me calmed down and talking about how screwed up everything has become. After all, the best time to leave your supportive psychiatrist and find a new one is when you’ve been suicidal for a month… right?

As usual, he was overwhelmingly helpful. Printing me documents, giving me extra lengthy prescriptions so I wouldn’t have to worry about my medications running out in the meantime, and giving me tips on a couple of the plans that might work best for me.

I have such a hard time trusting doctors (psychiatrists especially) that I felt heartbroken (for lack of a better word) walking out of his office. Our relationship always felt more like having a powerful friend than being subjected to some kind of overbearing taskmaster.

After all of this, it isn’t the emotional depression that stays with me, or the anger about being forced into a bad situation, or the anxiety about not knowing what to do next… it is the sense of loss and emptiness knowing that there is something of a hole where a good, strong support system used to be. The fear of finding myself in crisis and having to scramble to get help instead of knowing who to turn to.

Though the SSDI hearing last month was one of the most terrifying days of my life, this insurance situation is really much more detrimental to my overall mental healthcare. I’m starting over from scratch at a time when I am in a very fragile state, and there is still a lot more I need to research and determine before I can start putting the pieces back together.

The Initial Aftermath

Yesterday was the SSDI hearing. Turns out I was dealt the most difficult judge, and despite my intense anxiety I went in feeling more confident than I expected to be going in (which is slightly laughable, considering I was on the verge of a panic attack at any given moment).

I couldn’t tell for certain, as the man was straight-faced and tight-lipped, but I’m about 98% certain he didn’t like what I had to say. I laid everything bare, even things I haven’t told my therapist at this point… all of these horrible questions making me say things I didn’t want to say (but needed to). I answered the questions as best as I could, and despite the anxiety felt a stillness of emotion for the hour I was engaged.

I’d be lying if I said it was anything less than traumatizing. The sense of relief I felt when I walked out the door (feeling as if I’d done and said everything I possibly could have) lasted about an hour. As soon as Corey and I got on the bus, it began. My mind started replaying every little detail, every moment that made me cringe. Every instant I have suddenly began second-guessing. All of this has made up some horrible loop in my mind, giving me only a 15-60 second window of being able to think about anything before my thoughts automatically cycle back to the hearing. The hearing. The hearing. The hearing.

“Alan Tudyk will be at comic con this year… what about when you said you’d only posted your blog once last week? It looks suspiciously like three posts. But I did technically only post once! One was a re-blog and the other two I wrote at once and scheduled to be posted on the same day. That’s one day’s work, it just looks like three!”

Gahhhhhhhhhhhhhhhhhhh.

I got in bed early last night and took an Ambien to silence this obsessive inner monologue. I felt sneaky, like maybe I had beaten it, when it started up again at 4 o’clock this morning.

I’ve been trying very hard to look at this hearing like I might look at a job interview. The way I feel about most jobs is that I am not particularly interested at first, I’ve even been wary about the amount of stress the job would put on me. Then, after thinking about it a little, I become interested. As time begins to pass, my enthusiasm begins to grow, and I move from being interested, to wanting the job, to passionately wanting the job, to feeling like I need the job and ultimately feeling like I can’t live without it.

In the last year, my mind has moved from a place where “it would be nice” to have SSDI benefits to, “there is no point in living if you don’t have them,” (which I understand is untrue, just the way my brain tends to exaggerate sometimes). Undoing this thought is difficult, and doesn’t really lend itself well to helping me not frantically obsess over this for eons.

The truth is that I’ve been obsessing over this for a year. I am ready, really ready, to obsess over something else. Wrestling with this situation has been extremely difficult, so please refrain from calling/texting me right now in an attempt to find out more detail about how things went. That’s why I’m writing this post.

Luck was not on my side. I will find out “for certain” in a few weeks, but I can say with some assurance I really don’t believe I won.

SSDI Prep – Listing Former Job Duties

Each week I’ve been trying to mark something off the list my lawyer gave me to help me prepare for my SSDI hearing. My hearing is (gasp) is next week, so I’ve been running around trying to make sure I have things covered.

If you’ve been following along, the list so far looks a little something like this:

1. Keep a diary
2. Make a list of things you used to do but can no longer do
3. Make a list of medications
4. Write out a description of your job duties of your former jobs
5. Meet with your lawyer

Next week I’ll be meeting with my lawyer, which means this week is all about former job duties. Hooray. (Not.)

Many people who apply for SSDI benefits have been working at one job for a number of years. That, unfortunately, is not me. In the last five years I’ve had thirteen fourteen jobs, probably evidence enough to the average citizen that I have had a lot of trouble trying to work.

It isn’t that I am cavalier about working, on the contrary I’ve been in several positions where my employer wanted to promote me. I work hard, and I like working hard. The trouble is that working hard doesn’t like me. I become fixated with working harder and harder until not only is there no way I can keep up with myself, but my mood destabilizes and I am lucky if I can perform any task at all.

For a long time I thought maybe if I found the right job, this derailment wouldn’t happen. That’s part of the reason I’ve had so many… I’ve tried working a lot of different jobs, attempting to find both a position that I enjoy but also one that doesn’t leave me stark raving mad at the end of the day. What I found is that it doesn’t exist (or, at least, it wasn’t readily available in Seattle when I needed it).

The task of listing my former job duties is something of a feat, considering the number of jobs I’ve had and how different some of them were from one another. I must admit, I’ve been working on this step for three weeks because I knew it was going to be the most difficult… and what I have now is a spreadsheet (several pages) with a lot of bullet points and words on it. Things like (taken from several jobs, not just one):

  • Operate a POS cash register
  • Unload and process replenishment merchandise from trucks
  • Communicate with factories in India for product development
  • Work as part of a team to come up with ideas for product development
  • Measure incoming samples and convey technical details to factories
  • Dress and stylize mannequins
  • Perform friendly and upbeat customer service
  • Safely operate a stone saw
  • Safely utilize caulk, scissors, razor-blades, to create samples

You get the idea.

What it comes down to is creating a list like this can come from several sources. Here are a few I found to be the most helpful:

1. Look back through employee paperwork

I’ve kept a few of my “employee handbooks” and paperwork from when I started my new job(s). I realize this isn’t something that many people keep, but when I looked through the paperwork I found a list of job duties printed right on the paperwork. This was nice and easy, because there were a lot of things listed I would have normally forgotten.

2. Visit your employer website and search for job opportunities

If the handbook thing doesn’t work out, you can go to the website for your employer (given you were employed by a large corporation) and do a search for job openings like that one you were employed in. Job opportunities usually have duties listed right in the description, which is a great place to get details you may have missed.

3. If all else fails, consider what you did on a day to day basis

What did you do when you were at work? I would consider both your day to day responsibilities but also special responsibilities you may have had when something big happened. Were you asked to help prepare the store for a big event? Did you meet with the Chinese fabric vendors? Consider those responsibilities within your job duties.

Like the medication list I mentioned, I have found it is a pretty good idea to keep a record of jobs I’ve had, with information such as how much I earned at each job, the address of the business, the phone number of the business, who my manager was, and the dates I began and ended each job. With the encouragement of this new step (listing job duties) I’ve gone a step further and added a list of job duties for each job I’ve had to the “Master Job List” as well.

This list is more useful than just applying for SSDI, I’ve used it when applying for food stamps and certainly when applying for jobs (they always ask for the addresses of my former employers which I can never remember). Keeping a list like this could be extremely helpful if, heaven forbid, your symptoms require you to apply for SSDI down the road.

Don’t let me fool you. I’m not as organized as one might have you think… I just really obsess over making lists.

Anyway, finishing this task has helped alleviate a touch of my anxiety. All that is really left now before meeting with my lawyer is figuring out what to wear, which (as a woman with anxiety who worked primarily in the fashion industry -a fashion horror trifecta) might take a full week to figure out, which is why I’m giving myself as much time as possible. I’m a firm believer that our clothes say things that aren’t said out loud, and I want to make sure I am saying the right thing with what I’m wearing.