I attended my SSI disability hearing with my attorney at 9 o'clock this morning. Many people had asked me to let them know how it went, and what took place, so I wanted to share my experience with everyone.
We won't know for sure what will be the outcome of my entire social security disability application until we receive a written determination from the judge, but at the end of this morning's hearing my attorney said that he felt that "It went really well and that he believes I will be approved" It can take as much as 90 days after the hearing to receive a written determination and they are generally mailed to the applicant and their attorney at the same time.
Having now gone through this process, first independently and without a lawyer, and then after two denials we hired an attorney, and I must say... despite the fact that attorneys are well-paid for the work that they do (I believe they receive a maximum payment of $6,000 from your back-paid benefits IF you are approved) - I am SO GLAD that I was represented by an attorney. Knowing what I know now, I am glad that I applied when I did (because it makes me eligible for back pay and even though I was rejected those first two times, I recommend to anyone just starting out that you go ahead and get started because the closer the time you file to the last time you were actually WORKING, the better of you'll be.
Meeting with my Attorney and Preparing for the Hearing
Also, now having been through this - even with all of my doctors supporting my application, I realize that I should have COMPLETELY expected to be rejected multiple times. You are almost entirely guaranteed to be rejected if you are not being represented by an attorney - the reality is that the system is set-up to benefit those who know how to "play the game" - and VERY FEW civilians understand properly how to navigate things like the Social Security disability process... If you haven't already, I really do recommend that you get yourself a good attorney to help you.
Having been sick last month when I was supposed to have my pre-hearing meeting with my attorney to discuss and plan for the hearing, we had to do everything this morning in the hour before the hearing. My attorney looked over all my medical records, made an outline of my case with notes to refer to certain records, and then he went over many things that he assumed the judge would ask, for example, how long have I been using the wheel chair? Do I wear my braces when I am at home? Do I drive? Who prepares our meals, does the laundry, etc etc? My husband and I explained that while I can do many things on a good day - like making my son a sandwich - I can never count on my health... and that any kind of activity results in me paying for it with physical pain and any kind of activity generally results in the need to rest, if not sleep, for hours, or even days after the activity. I explained how often I've gotten up and taken a shower, and have been so worn out by showering (even when using a shower chair) -that I then went back to bed and was never able to actually leave the house.
After we discussed several other things, like how often and how I navigate the stairs in our home (I live in a split level house with my parents) - I explained that I avoid the steps as much as possible, and only need to use them when I leave. My bedroom, the kitchen, my son's room, our living room and my bathroom are all on the same level. My husband explained that when I do go downstairs, I often have ended up sleeping there and staying there for several days in a row, which is completely true. By the time we were called in to see the judge, I felt comfortable about what they would ask me on the record.
My Actual Social Security Disability Hearing
After we entered the hearing room and everyone was situated, the judge introduced himself to us. He explained that the session would be recorded and that I'd need to SPEAK "yes" or "no" answers during the hearing, and that you can't nod, gesture or point to things because the microphones obviously won't pick that up.
He introduced me to the court reporter and the occupational specialist and explained what both of them were there to do (self explanatory) and then he asked my attorney to present my case.
The attorney basically explained how old I am, what I did for a living (I was a Sheriff's Deputy, a road patrol police officer) and then when and why I stopped working (I stopped working when pregnant with my son, but I intended to go back to work - unfortunately my illness for worse and worse and I was never able to actually GO back to work). After explaining my condition and all my symptoms, the judge asked me some questions.
What I was asked during the hearing / My Testimony
The judge was very courteous, fair and reasonable - he asked questions that seemed genuine and not at all accusatory, which was good -I didn't feel defensive or as if he didn't believe me. For example, he said that he understood that while I use a wheelchair - I am not completely without the ability to walk. Both my attorney and I explained that if I DO walk, I am a fall-risk (I've suffered multiple falls in the last six months, usually related to the stairs in my house) and that I get tired and suffer from multiple painful dislocations frequently, so i used the wheelchair any time we are shopping, traveling any kind of distance, etc.
The judge asked me questions about my life before my illness, he was respectful about my occupation in law enforcement, about my hobbies and what I generally do on a day to day basis. (I explained that I spend the large portion of my days in bed in my bedroom, that my bed allows me to elevate my feet and take pressure off my low-back and hips) and that I generally watch TV, or watch things online and that I keep my son company while he does his school work and uses the ipad, reads or plays video games. I explained that I spend a good amount of time sleeping during the daytime and that chronic fatigue and severe insomnia have been an ongoing problem.
My attorney asked some questions about depression and anxiety that was noted by ER doctors and one of my physicians years ago, and asked why I'm not currently being treated for either. I wanted it to be clear that my depression is being CAUSED by my condition, it's not a symptom of it. I explained that I am not sitting at home not able to work because I am sad and depressed - that I am depressed BECAUSE I am sitting at home, unable to work. I told them that I loved my career, I was socially active and had a very fulfilling life before getting sick and that not being able to do the majority of the things I once loved is what is causing my depression. I also explained that I have anxiety (the judge asked me to clarify if I meant generalized anxiety, or the kind of anxiety that causes panic attacks and I explained that I meant the latter) - and that my anxiety seemed to be worsening along with my physical symptoms, and then I used my emetaphobia as an example. I explained that I've always had a difficult time dealing with anyone who was ill or vomiting, but that in recent years, I've become fearful of public situations in which someone could get sick - such as flying where someone could become airsick, or keeping my family company at an amusement park, because someone could suffer from motion sickness, and that my panic responses have gotten more severe and the symptoms last longer than ever before - and that I hope to see someone and begin treatment but that I haven't been able to afford to yet.
The Testimony / Statement from the SSI Doctor
One of the major things we had to contend with - one of the main reasons my case was rejected multiple times and even REQUIRED a hearing was because years ago, when I first applied for disability, social security sent me to a psychologist and an orthopedist as part of the process. Both of these doctors regularly do evaluations for SSI and have no practice outside of that area - so basically they are paid to keep people from getting benefits, which I personally feel is completely unfair and horribly dishonest, but regardless, it's something most people who apply have to do, regardless of how many of your OWN doctors see and treat you.
My appointment was a few years back, and I was disgusted and horrified to receive a letter after the appointment with the orthopedist which more or less said that I was perfectly capable of returning to work. It was crucial for my attorney to use the doctor's reports from my actual doctors, as well as my testimony, to show that the SSI doctor's report was not at all accurate.
The judge asked me various questions about the things that doctor had said in his report, as well as questions about the tasks that the doctor had me perform - for example he noted that the SSI doctor said that I "walked across the room, turned, and returned to my seat without aid", which showed that I had no trouble walking.
The judge asked why that differs from what *my doctors* statements, and what I've said, I explained - "The SSI doctor gave me a bunch of tasks to complete during the appointment -when he did, I asked him if I should try to do the tasks if they were causing me pain, or if they caused me dislocations and I had to stop - if I shouldn't attempt to do it... The SSI doctor said that if I didn't do the things he asked, he would just document it in his report. During the exam, he was dictating his "exam" verbally into a recorder - so the first task that he asked me to do (To squat to the ground, down on my toes, and then stand back up) - I told him that I could not do that without dislocating my hips and ankles.
First of all, the SSI doctor ROLLED HIS EYES at me and said "How do you know that if you don't actually try?" (Which i thought was disgusting and incredibly cruel - not to mention unprofessional. I've been living in my body - I'm pretty sure I know what kind of things do and don't cause me pain by this point!!) - but I didn't mention that to the judge.
I felt that it was important to stick to the FACTS, and that if I was going to be believed and be able to REFUTE the things the SSI doctor had documented about the exam, that I should not make any comments about how I FELT about the jerk SSI doctor: I didn't want to include ANY opinions at all. I explained to the judge that when I wasn't able to perform the first task he asked, I told him that I couldn't do it without hurting myself and that the SSI doctor then dictated into his microphone (that was recording his statements for his official report) he said "The patient refused to perform the tasks I requested." I told the judge that I felt like I HAD to attempt to do as many of the tasks as possible, even if they caused me dislocations and pain, and that I did not agree with the doctor's report about my examination because in it, he did not make ANY notes about the actions that caused joint dislocations or pain - for example - when he physically manipulated my joints, he noted that I had an extremely hyper-mobile range of motion, but in doing that, he didn't document that my joints reach a point where they subluxate or dislocate, or, that moving my joints in many directions or past many points caused me severe pain and I had to ask him to stop. I believe that the judge felt that my statements were truthful and I was proud of myself that I was able to leave my anger and frustration completely out of my statements about the SSI doctor.
I feel like my attorney was happy with my testimony, as he told the judge that I didn't REFUSE to do any of the things the SSI doctor asked of me: Instead, I had asked the SSI doctor if I should attempt tasks despite the pain and he said that I should, which resulted in him documenting many things in his report, in which he said that I'd been able to do them, but that it wasn't an accurate representation of my abilities because he didn't make any note about the what caused me pain, what caused dislocations, what tasks I had to stop, and which of the tasks had a lasting impact on me for the rest of that day or the days that followed. The judge seemed pretty convinced, and in the end, it appeared that he also did not agree with anything the SSI doctor said.
I felt good that I was able to convey all that without actually saying anything disparaging about the SSI Doctor (as much as I would have liked to). In reality, his staff member was extremely rude to me, the doctor jimself was very short with me - he was physically forceful and when he was manipulating my joints during the exam, he noticed and even cringed, that my hips, knees and ankles popped out of place in his hands, but then he failed to make any notes about them doing it! He did make notes that I had "More than a normal range of motion" - but he made it sound like I am merely FLEXIBLE, and his report read as if my joints being "extremely hyper mobile" was a GOOD thing, rather than it being a *MAJOR* health problem.
I told the judge that I felt that my only options were either to force myself to suffer through tasks that caused me pain, or to appear uncooperative because the doctor would document that I "refused to do the test" - I am not the type of person to REFUSE to do things that are asked of me, especially in an official capacity, and I wanted the social security doctor to accurately see my health issued. I wanted to do as many things that I possibly could in order to demonstrate the problems that I was suffering from. I told the judge that I didn't understand until I received the report, that the SSI doctor's opinion would misrepresent my actual situation and my condition so drastically.
In reality - the SSI doctor made broad, sweeping statements like "The applicant drove herself to the appointment, and entered the building without assistance or the use of any mobility aids" - but he didn't document that I was told that missing the appointment would result in my claim automatically being dismissed, and that there was no one home or able to drive me. He didn't mention that I lived a mere six minutes from the doctor's office either. He didn't mention that I didn't bring my wheelchair because I can't push myself in it - or that I can't use crutches or a cane because it causes my wrists and shoulders to dislocate. He didn't say that I used the car the door for support, the railing to ascend the handicapped ramp, that I had a significant limp in walking the nine feet to the front door, Or that I entered and *immediately* sat, uncomfortably, where I waited to see the doctor.
Of course no one had documented what REALLY happened... no one documented that I asked the SSI doctor's assistant to bring me the clipboards and forms at my seat because I couldn't stand up repeatedly and walk back and forth to the counter, or that she'd instead said "just take your time" and left them sitting on the counter, refusing to walk them to me. She sure as hell didn't document that I couldn't stand at the counter to fill them out or that she got aggravated with me for taking so long to fill out the thick stack of forms they gave me because my wrists and fingers were swelling and in pain. No one warns you that they will be asking you to re-write nearly a complete copy of your ENTIRE disability application ALL OVER AGAIN. They needed to know ALL of my doctors, all of my medications, all of my conditions, all of my symptoms - ALL things that were IN my SSI report already (which supposedly this doctor HAD...) and which I had DICTATED in the first place, rather than hand-writing them, specifically because I can't do that kind of thing anymore. But I digress.
The SSI doctor also didn't document that his assistant got aggravated with me for holding up several other patients who were waiting for her and the doctor, because the doctor couldn't see me until ALL of the paperwork was filled out. They had asked me to show up TEN MINUTES before my appointment, but ten minutes is NOT enough time for me to fill out tons and tons of paperwork that causes me a severe amount of pain. They didn't document that she stood beside her desk, with her hands on her hips, staring at me, rolling her eyes and SIGHING audibly, because I was taking forever and they told me that I couldn't take the forms home to complete them later, nor could I see the doctor and THEN finish filling out the forms. Nope - none of that was mentioned in his report - his report made me sound like I was TOTALLY fine and healthy.
I explained that when the SSI doctor asked me to do tasks during his exam, he would make notes, for example, that I was "able to pick up a pen, write my name, and then put the pen back down" - but that didn't mean that he documented that I dislocated my wrist and several fingers DOING the task. I also told the judge that even the things that I could do would cause my hand and wrist to hurt or swell, and that it remained painful and swollen for the next few days. I also told him that I went home from that exam exhausted, and that I fell asleep and remained asleep until the next evening.
Testifying about My Medical Issues
You do have to prepare yourself to be asked, in front of a roomful of people, about every detail of your medical history and your life. If it brings you to tears to talk about how you can't take a shower until your husband is able to help you wash your hair, or you think it's going to bring you to tears to talk about how you no longer have any friends - be prepared and grab a tissue. They (wisely) have a box sitting on the table. I was proud of myself, because often in nervous situations, my nerves get the better of me and tears well up, and my voice waivers -even if I'm not sad. It was difficult to talk about my bladder problems, my GI issues, my depression and anxiety, my severe phobias and how I basically have no life - I'm not going to try to say that it wasn't demoralizing and humiliating, but I tried to keep my focus on WHY we are there. It's not therapy, it's a hearing to determine if I can work again, and I tried to keep myself mentally fixated on that task. I'm not telling you not to go in there and cry - but you do want to do your best to remain calm, factual and not to get off-task or talk about things that don't matter to the judge. I did my best not to talk about the financial strain of having no income whatsover for five years, or how upsetting it is to be treated like crap by so many doctors over the years - those things just have no place in the hearing for social security benefits.
I had to explain to the judge (as my attorney asked on the record) that my dislocations and subluxations aren't DRASTIC, dramatic events that everyone around me notices. I explained that they are sudden, painful, and unpreventable and they happen as often as a few dozen times a day often from very minor activity, including things like rolling over in my sleep, or adjusting the way i'm sitting. I explained that some joints dislocate or at least subluxate EVERY time I move them (like my right shoulder that slips out of the socket every time I lift my arm over my head)- I explained that yes, at times, my joints pop loudly when they dislocate, or sometimes my body moves in a way that its obvious to anyone who is looking directly at it, that something has happened. I had to explain that normally my joints slide out and go back into place quietly and without a great deal of force - that usually I simply shift my weight, or re-positioning my body or applying some kind of force, and I had to explain that despite it being painful, I don't scream out or announce to everyone around me, every time something dislocates, so no one would really know when it's happening unless they are around me a lot or if I'm surprised by a sharply painful dislocation.
I explained, "For example, just while I've been speaking to you, I had to manipulate my two fingers on my right hand back into place because they dislocated when I opened and then closed my hand." The judge looked surprised, but he didn't look as if he didn't believe me, which was comforting.
The attorney asked questions about what happens to my body when I suffer a dislocation - I explained that in the immediate, a dislocation usually causes pain, but how much pain and for how long the pain lasts REALLY depends on the joint(s), and that some dislocations (especially my hips) cause muscle spams that travel across my lower back, near my spinal column, and even across my shoulders or down my legs. I explained that some of my joints that dislocate more frequently than others (my hips, knees, wrists, fingers) and that those also go back in place more easily and sometimes with very little effort, but putting the joint BACK IN often causes me more pain than the original dislocation itself.
Fortunately, my own doctors' notes did focus on the pain I had been experiencing over the five years since my diagnoses, including documenting the pain and swelling in my right thumb, fingers, wrist and hand, and my attorney made sure to point that out, as well as noting to the judge that I am right handed. I explained that we had temporary ring-splints made at one time, but that permanent ones are very expensive and I have not been able to afford to get them.
The entire hearing lasted about an hour, and other than the above, the judge asked some more specific questions about the history of issues with my bladder (during which I was able to explain my doctors theory on how my year-long treatment with powerful antibiotics levoquin and ciprofloxin had done permanent tendon damage and that AFTER my treatment, a black-box warning had been added that those medications should never be used in people with joint damage like connective tissue disorder and arthritis.
Finally, the judge asked if there was anything else about my work history, my living situation or my health that I wanted to add to the record, and I took that opportunity to say "Despite the fact that my attorney and I had already discussed that I suffered from both insomnia and chronic fatigue, I wanted to express the severity of both of those conditions."
I explained that I have tried many therapies and treatments under the supervision of my doctors, including many different medications in order to better regulate my sleeping patterns, the amount and quality of the sleep I get, or to try to prevent the sudden onset of severe fatigue that frequently hits me - but that we have been unsuccessful in finding anything that works, and those particular symptoms are as bad, if not worse than the ongoing chronic pain.
I wanted to be sure to explain my situation because the reality is, even if I COULD suffer through some kind of desk job with the pain that i deal with, I would NEVER be able to actually get and remain employed, because I would miss SO damn much work. As soon as the fatigue comes on, there's NO way for me to concentrate - I have NO choice but to lay down and sleep right then. My focus and attention are non-existent as soon as the fatigue hits me. It's sudden, I can't control it, and even getting plenty of sleep or taking medication to combat it, doesn't keep it from happening.
In the End and What Happens Next...
The reality is, regardless of what happens - there is NO way I will ever be able to work again unless some magical solution comes along that treats the severity of my fatigue, the severe insomnia that's plagued me for five years, AND the joint dislocations and pain I deal with every day. As my husband and I discussed on the way home - there's no point in stressing out endlessly about the hearing and what is going to happen because it's out of my hands, and even if it goes the WORST possible way - there's not a damn thing I could have done differently.
I wanted the judge to understand how much that impacts every single day of my life, and I was glad that I was able to do that at the end of the hearing. In the end, I felt like the judge was polite, professional, and (ironic as it is) - I didn't feel like he was judging me. That's kind of funny, isn't it? I really didn't feel like he was eyeing me up and down, judging weather or not I was being truthful, or accusing me of exaggerating - for that - he was more kind, polite and professional than 90% of the doctors I've seen in the last ten years.
I really REALLY hope that everything really did go well. I had plenty of records from every hospital and doctor I've seen, I even included the documents from the oral surgeon that showed that I had to have all my teeth pulled because the Ehlers Danlos Syndrome has impacted my whole body. I felt good when we left the hearing (well, okay, my left wrist was throbbing, my fingers were white from reynauds, my neck and back hurt from sitting up in the wheelchair, and I was simultaneously buzzed from the excess adrenaline and exhausted despite having actually slept from 7pm the night before to 7am this morning) - but in terms of the hearing itself, I felt like I'd done the best I possibly could, without being too verbose or without offering anything that I regretted saying. I didn't exaggerate anything, I was honest, and I felt like I came across that way. When the attorney told me outside that my testimony was "perfect" and that "he felt like everything went well and would be approved" - I felt even better.
Now we start what I HOPE is the final wait... the wait to get the actual determination letter.
There are four ways a Social Security Disability Hearing can go:
-I can be rejected and told I can return to work - and if the attorney feels that there was a violation of the law in the way the judge made his determination, he can appeal it.
-I can be rejected and if there's no violation in the judge's actions, there's nothing else the attorney can do, and we're screwed. I can never work again, and I also won't have any income at all from social security.
-I can be approved, but only partially, because they could find that they don't have enough evidence to go all the way back to the date that my doctors and I said that I became disabled (January 2011)
-I can be approved, and will receive disability payments backdated to the time of my application. Obviously, this is the one we are REALLY hoping happens.
We should know within 90 days, when a letter will arrive at my attorney's office and also at my home. After that, I'm not sure how long it actually takes for them to get a check out (assuming I am approved) - but it's been FOUR YEARS since this started, and even longer that I haven't been able to work... so a little while longer shouldn't make any real difference. I am just going to keep telling myself that until we hear back, because that's all I can really do.
Your thoughts are really appreciated- of course this is stressful no matter what I TRY to focus on, and our family REALLY really needs this. There are SO many things that I could do to improve our lives and my situation -starting with dentures and ring-splints for my fingers, that I can't afford to do without this income, so we REALLY need it to come through.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.