My disability claim was denied while I was in the hospital

First, let me start with this: I’m lucky.  I have a job—a great-paying job that I love, with supervisors who believe in me and are holding my position while I get treatment.  I’m grateful every day for that because I know those of us who are aren’t so lucky are likely homeless, or worse, in jail, because mental illness can make us desperate and irrational.

When it comes to childhoods, I’m not so lucky.  So what, right?  No one has it perfect growing up.  But because of repeated sexual and verbal abuse, I didn’t spend my childhood growing up.  I spent it trying to survive.  Or maybe I grew up too fast.  I grew up in the time of afterschool specials and knew to be wary of strangers.  But no one ever told me I couldn’t trust the people in my own home.

Fast forward through years of school (how I managed to graduate at the top of my high school class or with a bachelor’s degree from a good university is beyond me—I think I knew it was the only way to escape) and years of working (I got my first job at 13 on a horse farm and worked through most of high school and all of college, and I started my first “real” job right after graduating—I’m also lucky that the economy wasn’t in the tank then).   I had friends, hobbies, dreams.  I had made it.  I had cut ties with my family right after high school, and it was hard not having family.  Maybe that’s WHY I made it.  Because I had no safety net, no one to fall back on if I failed.   I got a dream job and moved out of state, started over, and for the first time, I was comfortable, living the dream.

And then it all fell apart.

I guess it’s true what they say: You can’t shove ten pounds of crap into a five-pound bag.  Underneath everything, during all those “normal” years, my demons were sleeping.  They’d awaken now and then, and I’d cut, or punch walls, or drink.  And then I’d be okay.  Or pretend to be.

But I am not okay now.  Work became a chore, then it became hard, then it became impossible.  And then one morning on my way to the office, I drove my car straight into a tree because I couldn’t face one more day of being numb.  I needed to feel something, even if it was pain.  I checked myself into a psychiatric ward that same day.

We spin webs of pretty gossamer over our madness, hoping someone will see through to the ugliness inside—and being terrified that someone actually will.

After the psych ward, I started an intensive outpatient program (IOP)—four hours, three days a week of poring over my past pain and my current symptoms.  I’m doing everything I can to get back to work.  I even went back for a month because my disability insurance carrier is slow, unreliable, and my case manager never picks up her phone.  I’ve left countless messages, some of which actually get returned.  I wasn’t going to be able to pay my rent if it didn’t come through or I didn’t go back to work.  And because life has taught me to trust no one and because I have no safety net, I went back.

I lasted a month, never actually making it through an entire week, sometimes not even making it through the process of logging into the system before the inexplicable tears came and I couldn’t breathe.  Everything in the office was too bright, too loud, too busy.  There was a party for a colleague’s retirement and I had to leave the office because it was so loud and crowded that I couldn’t deal with it.  A happy break from work for most, a nightmare for me.  I’ve been diagnosed with PTSD and bipolar disorder, and I’m constantly on alert, worried that something terrible is about to happen.  You know that feeling when you realize you forgot to pay a bill, or do something really important?  I feel that way all the time—but there’s no specific cause.  I jump at shadows, at noises, sometimes at nothing at all.  Having people constantly coming and going, walking all around me, the sudden bursts of laughter, my newfound inability to concentrate on the work I once loved—it became unbearable.

I went back to the intensive outpatient program and back on disability.  The checks came, but they came few and far between, meaning I’d have no money for weeks and then get a lump sum later.  This is a problem.  One of the more well-known symptoms of bipolar disorder is impulsive spending.  It took every ounce of will I had to ignore the whispers that I could buy anything I wanted with those checks instead of using them for rent, food and gas to get to IOP.   Every time I would call to check the progress of my claim, I’d be told my doctor hadn’t sent in the necessary paperwork.  Every time I would call my doctor, they’d say they sent it.  Meanwhile, I’d be home having trouble breathing whenever I realized rent was coming due and I had no money for food, let alone several hundred dollars to keep a roof over my head.

My emergency fund was long gone, and things got so bad that my car was repossessed.  I sold absolutely everything of value that I owned, including a necklace I got as a birthday present, a keyboard I’d bought in a fit of mania when I thought I could teach myself to play, a bike I’d bought on a fitness kick.  I did rediscover my love of sewing, and after making an iPad case for a friend, I developed a grand plan to sell them on Etsy, and I could picture myself turning them out like a machine.  I was so sure it would happen that I was already spending the money I would make.  It’s rational, but that’s how confident the illness makes me.  In reality, it was a good way to make a little extra cash—until I crashed into a pit of depression so deep I couldn’t leave the couch for anything except bodily needs and to let out my dog, who is my knight in furry armor.

I know without a doubt that I would be dead without my dog.  I’ve had suicidal thoughts for as long as I can remember, and before this year, I would have said I’ve been suicidal before.  But those were just thoughts, half-formed plans and ideas when the demons awoke and things got rough.  I now know that those thoughts were just thoughts.  I was truly ready to die when I aimed my car for that tree.  After I left work the second time, not only did I want to die, I didn’t want to live another agonizing minute.  Every breath was painful.  Every thought hurt.  I didn’t even think about going back to work because I knew I wouldn’t be alive by the time rent was due.  I typed up my last wishes and stuck it on the refrigerator.  I was glad for the mania that drove me to clean my apartment top to bottom so whoever came to empty it wouldn’t have to deal with a mess.  I thought about the paramedics who would come and I hoped they wouldn’t be upset by my death.  The only thing that stopped me from swallowing those pills was knowing that my dog wouldn’t understand why I’d left him and I couldn’t bear not knowing what would happen to him.

I don’t know how I clawed my way out of that bottomless pit, and that’s one of the most frustrating things about mental illness.  So much of it is inexplicable.  With bipolar disorder, I go to bed each night not knowing who I’m going to be when I wake up in the morning.  Will I be a ball of energy with racing thoughts and grand ideas, taking my dog for a long walk and then cleaning until every inch of my apartment is scrubbed, dusted, laundered and mopped?  Or will I be the defeated, pathetic creature who can barely make it from my bed to the couch, let alone tackle the sink full of dishes spotted with mold?  Or will it be one of those days when I start cleaning only to panic because the stove will never be clean enough?  I’m so divided that I gave myself a new name.  My legal name (first and last) was not what most people know me by; it wasn’t what I go by at work.  I’ve since changed it.

My disability insurance carrier denied my claim WHILE I was on a locked psych ward.  Yeah.  They said I was just fine to work 35 hours a week.  I’m appealing that decision, which they based partially on the fact that I was able to file the paperwork to change my name.

I want to scream at them: “I’M BIPOLAR, NOT STUPID!”

I love my new name.  It’s a break from the horrors of my past.  But there are still times when the voice in my head doesn’t fit me.  I often think in a five-year-old’s voice, with the little-kid accent and simplistic thoughts to go with.  These thoughts are either very sad, or very afraid, or very happy—like the time this voice decided I was going to have a party with my dog that weekend.  I bought cake mix and ice cream only to open the cupboard a week later, wondering what I was doing with a bunch of funfetti mixes when I live alone.   The rational part of me knows the childlike thoughts aren’t normal, but I can’t make myself wish them away because I know they’re better than the times when all I can hear is the screaming inside my head.

And then there’s the paranoia, which is a new and terrifying symptom.  I’ve always been aware of my surroundings and felt the creepy fear of being watched from time to time, even when I knew it was silly.  But it’s getting worse and worse, to the point that I’m seeing figures in all the everyday shapes around me, from a bag on someone’s porch to a mailbox down the street.  Therapy has taught me to “reality test” irrational fears, but these glimpses are so fast that by the time I look again, they’re gone.  I feel like I’m constantly in danger.  My walks take me down a one-way street and I walk facing traffic so cars can’t catch me off guard, but that doesn’t stop me from hearing whispers of tires on pavement and turning around every few feet to make sure there’s nothing there.  I’m lucky enough to live near water and was feeling good enough a few days ago to take my dog down to the beach early in the morning.  There was no one in either direction, but that didn’t stop me from turning around every minute or so to make absolutely certain that we were safe.

I’ve spent the summer not working and living a block from the beach, but I’ve only set foot on sand twice.  Once in the above mention, and once right after I got out of the hospital.  I went with some people I’d met on the ward, but I couldn’t relax and enjoy the sun and warm company because I was overcome with fears that they’d lured me out of my apartment so their friends could rob me and hurt my dog while I was gone.

Why am I writing all this?  (Other than that there’s nothing left to clean and I’m feeling the pressing need to DO something.)

It’s because no one would choose to feel like this.  No one would choose crushing sadness or pain or fear or exhaustion or spilling deepest darkest secrets to strangers three times a week.  Sure, everyone would like the energy to have a spotless house, but no one would choose the panic that comes with being certain that some speck of dirt remains and will never be found no matter how hard I try.  Sure, everyone with a full-time job would like extra time off work, but no one would choose to have to decide between buying food and having enough gas money to get to therapy.

It’s pure hell knowing that I could solve every single one of my financial problems by going back to work.  But pushing myself through horrible days, barely making it through (or feeling like a failure for having to leave early) and being terrified of messing up and getting fired, and jumping through my skin every time someone comes near me is just as bad as worrying about homelessness.  Maybe worse.  Even picturing myself at my desk reading the pets column I used to enjoy makes my chest hurt and my head scream.

It’s hard not to wonder why this is happening to me, and it’s hard not to give in to fits of shouting “It’s not fair!”  But when it comes to health care and disability, it really isn’t fair.  Because there aren’t reliable tests for depression, or PTSD, or bipolar disorder, everything is based on what the patient reports.  Do some people lie to get benefits they don’t need or deserve?  I’m sure that happens.  But for the rest of us who are dealing with crippling symptoms—and even life or death struggles—it really isn’t fair.

The bias is evident even in the paperwork I have to submit, with questions about how much weight I can lift and nothing about how often I see things that aren’t there.  Hell, there are days I feel like I could lift an elephant, but I don’t see how schlepping boxes is relevant to my condition.  These forms are perfectly fine for someone with a broken leg, when a doctor can write that the patient will spend a set number of weeks in a cast and then a certain number of sessions with a physical therapist after.

But what about my broken mind?

I’m being punished because my doctor can’t estimate a return to work date.  But what about patients with cancer?  I know there are set times that rounds of chemotherapy take, but no one can be certain how many rounds will be needed, or if it will even work at all.  EMDR (eye movement desensitization and reprocessing, a highly praised treatment for PTSD) has clearly defined stages of treatments, but no one can be certain how many rounds will be needed, or if it will even work at all.  And CBT (cognitive behavioral therapy) and psychotherapy in general are even less defined in terms of length of treatment.

I would like to think that we as a society are past the point of thinking that mental illnesses are made up, or just weakness.   People who are truly suffering are told every day to “be positive” or that it’s just “mind over matter.”  That’s like saying a person with a spinal injury just wants to sit in a chair all day, or that she could walk if she really wanted to.   I really want to feel better.  There are days when I think of suicide not because I want to die, but because I just know I can’t take living in pain like this.

No one would choose to feel the way I feel.

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