To be clear - this is my written account of my experience that occured years ago. As many people with my condition have had to fight through multiple denials and rejections while applying for social security disability (as did I) - the discussion often comes up (especially w/ EDSers who are going through the process right now) - they want to know what MY experience was like when when I was doing the same steps that they are now facing.
As a result, I wanted to write up the story of my personal experience with the Orthopedist that I was sent to during my SSDI process. I'd already been seeing multiple specialists on my own for years, and I had a solid diagnosis. I had an orthopedist, a positive ANA test done by my rheumatologist. I'd had DNA tests, a pain management team and no one that treated me was unsure if I was disabled or not.... but the Social Security office still wasn't sure. And they definitely didn't want to start paying me the benefits I'd earned unless they absolutely had to. And now that we've gotten the background set for you- Here is the story of MY visit to the State SSI Doctor (Nov 2017):
On the day of my scheduled appointment, I was annoyed that I would have to drive myself. I didn't often drive, and I didn't want to show up to this appointment, making it seem like hopping in the car and taking myself someplace was no big deal. The reality - is that I don't drive very often any more because of my chronic fatigue, and the fact that once I get somewhere, I can easily injure myself, or wear myself out to the point that I would then not be safe to drive myself back home. Unfortunately, on that day, at the very last minute, my husband had to go deal with a job and so jr couldn't take me.. Canceling at the last minute could hold up my SSDI case even longer - and so it was too late to reschedule. It was only a five minute drive from my home, but I was more worried about what my driving to the appointment would show to the people trying to determine if I could work or not.
The reality is- the Social Security administration can film, observe and "count" every moment of your life- not just every moment of this specific appointment - meaning that if you walk from your car to the door, they are going to document that you have no problem walking 50-100 feet at a time. They don't care if it's slow, appears to be painful, involves limping, etc. If you make it into the building without a wheelchair, they are going to document that against you. Nevermind that this is an appointment that you're FORCED to go to - you know that if you limp your way into the building and sign in - they are going to joyfully put it in your case file that you're totally capable of walking around just fine. (You know - because they don't see you once you get home and pass out for the next 16 hours.)
So I get myself inside & sign in for my appointment. I brought with me the forms they had sent to my home and asked me to fill out. The forms were long, and my wrists and fingers and the arthritis in those joints don't love paperwork any more, and so my husband had me type them, and he printed it all out.
This woman at the front desk - this nurse or assistant or whomever this woman was (shes not in a uniform - no name tag) - Well, she didn't like my typed forms & handed me a stack of thirty plus forms & she tells me to fill out all that information before I see the doctor. Before I consider how to begin the paperwork, she speaks in an already exasperated tone.
"Did you bring all of your prescription medications with you? I need to document all of them while you take care of that paperwork."
Yes- I had read the instructions from the state. I had brought all of my medications with me, all in their original bottles. Being a retired police officer - I am well aware that you must always have your prescription medications in their correct bottles. I wasn't sure why Social Security actually asked you to do it, but I did have them inside a bag, in my purse. What I didn't understand - was what she was going to do with my prescription medications.
"What do you mean?" I asked her.
Mind you, I had already sat down in a waiting room chair at this point. I can't stand around without my hips, knees, ankles and back SCREAMING after just a few minutes - so I was sitting down and not in her line of eyesight from her desk. This meant, in order to hold a conversation while being able to SEE me, she would have had to stand up and step around the desk.
She seemed very annoyed by the extra effort I'd caused by my having sat down, rather than standing by her desk. That's the thing about chronic pain though - my first priority is always going to involve avoiding unnecessary pain.
"I'm going to take your prescription bottles, document all of the information we'll need from the bottles labels, while you're filling out your paperwork," she told me - it very much came across with an attitude of "Durrrrr.... what the hell do you think I'm going to do with them?"
I started to pull the plastic bag containing all of my bottles from my purse, but I hesitated. After all - I don't entrust ANYONE with my medications. Lost, stolen - it doesn't matter. If my medication disappears, I am the one who will be in a VERY bad place. In 8 years, I've never left my medication anywhere that it wasn't in my posession or my husband's - because i know he too would guard them with his life.
"Oh," I said, "I didn't realize anyone needed to actually handle the bottles- I didn't bring the pharmacy papers- just the various actual bottles - most of them actually have my medication in them. I didn't realize you'd need to take them...."
She was clearly OVER the situation - she'd been EXASPERATED with me in the first few seconds of my walking in the door and this conversation wasn't endearing me to her either.
"Don't worry - I'm not TAKING your pills," she practically laughed at me. It was CLEAR that she found my reaction ridiculous and that her opinion of me was that only a drug addict would be concerned about their medication being out of their eyesight. She definitely wanted the other patients to hear all of this. "I'm just *documenting* the information that we need from your bottles, and then I'm giving them RIGHT BACK to you. You'll have them back by the time you're done with the doctor."
It made me pause. I was very creeped out by this angry and unprofessional person, and I'm supposed to entrust her with bottles of medication - which if lost or destroyed or stolen - would leave me in horrendous condition for weeks on end?
First and foremost - everything about this "state run clinic" seemed shady- It was in a dingy, dusty, outdated looking office. They don't see any real patients - only social security applicants. They had stacks and piles of files EVERYWHERE. If their building is so disorganized, understaffed, and they are CLEARLY busy... I definitely wasn't WRONG to feel uneasy about handing over my medication to this woman. What would my recourse be if she gave me back my pain medication bottles empty? If I called the police - not only may they not believe me - but they aren't going to get my medication replaced. I texted my husband in a panic- asking him what he thought I should do. Do I actually hand over my medication bottles to this awful woman?
The ONLY person I'd seen other than a dozen or so (presumably) patients.... was this one woman. She was wearing scrub pants, a Metallica t-shirt, and had no name-tag. She smelled like cigarettes and there was no indication that she was trained as a medical professional - and now, in this busy office, where she appears to be annoyed and distracted (while doing six jobs at once - she wants me to hand her my bag of prescription bottles including the two controlled substance pain medications that make my severe pain bearable.... There was also a muscle relaxer, a sedative for my upcoming dental surgery, a stimulant medication that I take for ADHD, - and she's telling me to hand them all to her, and that she's going to take them OUT of my eye-sight (to do....something?) - photograph them? Write down the info on the front of each bottle? Count my pills and compare the # of pills to the dates on the bottles, to show if I am taking them correctly?
Whatever the reason, I couldn't shake that I was NOT at all comfortable with it - but at the same time - I knew that this is a STATE run appointment -and that I'm expected to go in, to play along, to cooperate, and I felt more than a little strange to refuse..
Still - I didn't want her taking my medications out of my sight - or for her to handle them (gross!) maybe that seems strange to some of you - but literally don't know this woman - and what little I do know - I do NOT like. She's not my doctor or a nurse at my doctor's' office - I have no reason to trust her, and my gut is SCREAMING "Don't do it!" - and so... I said to her;
"Can you give me a moment?"
Just then, I was saved; The office phone rang AND someone walked in the door - and she had to deal with them. (In that moment, I noticed something else disturbing - she already had two piles of other people's pill bottles ALL laid out on the table behind her desk. The piles of bottles were behind her computer and her desk phone - both piles could EASILY be reached by anyone walking towards the office's restroom. A bottle could be snatched up, grabbed in a split second from behind her back by just about anyone.
While she was tied up for a few moments with the phone and the new office visitor and so I capitalized on that time and I dumped all four of my controlled substances into individual tissues, twisted each closed, and tucked them into the front pocket of my purse - and with that - I popped the tops over each of the bottles and then dropped them into the bag, which i set down on her desk. I also had decided; If she had intended to count my pills, she could wait and she could do in front of me after the appointment.
I had about twelve minutes left until MY appointment and so I turned my attention to tackling that paperwork. A quick glance at the forms that shed given me was all I needed to recognize that I already filled in ALL of that same info, it was all on the typed pages I'd brought in with me And with that, I sat, holding the pages, and I did nothing while I waited.
Unfortunately- she took notice that I was not writing (she was still on the phone). She covered the mouthpiece and in a hushed fake-whisper, she told me;
"The doctor can't see you until those are done."
I couldn't answer her because the person on the other end of the phone had started speaking again - but I DID gesture; I held up the very detailed completed set of forms I'd brought with me.
I looked over the new blank paperwork - I was going to start to fill it out just for the hell of it - but I quickly realized that my options were:
A) To stand at the counter beside her desk while I filled them out....
B) I could lean down awkwardly, and painfully - all so I could attempt to use the bottom (seat-area) of the metal waiting room folding chair to lean the paperwork on.
Either way, this is an ABSURD situation for a disabled person who is expected to fill out paperwork.
It honestly felt like this whole thing was a set-up to TRICK people into standing around for long periods of time, leaning on the desk/counter while they wrote all the information down about how they cant stand for long periods....
I tried to wait patiently for the woman at the desk (As she's checking in every person coming in, answering the phones, answering questions as people would walk up to stand before her - oh, and she was supposed to be dealing with all those pill bottles too - remember?)
Here I was - trying to get a word in edgewise - but she was engaged with all these other people. All I wanted to ask - was "Hey, do you have something firm I could write on, like a clipboard?" I'm sitting there- big wad of papers in hand - waiting a turn to speak - but she is going from phone, to walk-up, to the USPS guy popping in with a handful of mail, to addressing MORE people coming in the door - to answering more questions from a woman who stood up to hand her more paperwork....
And then *FINALLY* - She spots ME - still sitting there, staring expectantly at her - papers in hand - not writing anything.
Exasperated, she sighs and rants;
"Is there another problem? I've already told the doctor you're going to be late for your appointment slot because you need extra time to do the paperwork. And that I don't have your pills done yet. You need to fill those ALL out before you can be seen. If you're not going to fill them out - I'm going to have to document you as having missed the appointment because you refused to cooperate with the doctor's instructions, and we'll move on to a patient who is doing what they are supposed to."
I was SHOCKED - So shocked that for a few seconds, I could barely find words to reply - and I am an EXTREMELY extroverted person... My husband will be the FIRST to tell you - finding the right words to say has NEVER been an issue for me.
I could barely choke it out-
"I was trying to get your attention to ask if you had a clipboard - I can't hold these papers up in the air to fill them out - this is a lot of writing, and I need something to lean against...."
What followed was the biggest, most over-dramatic SNORT/GROAN and about the most bitterly sarcastic laugh that I've ever heard. This was accompanied by an eye-roll as if she were performing on camera or something.. As if asking for a clip-board to fill out nearly 30 pages of medical questionnaires - fill-in-the-blank, check boxes & open ended questions that included things like:
"List any and all previous hospitalizations" and "List all of your medications, both OTC and prescription, your dosages, amounts, what the medication is for, and which doctor prescribes or suggested it. Include supplements, vitamins, and any OTC substance you take more than a few times per month."
To be clear - I literally had the type-written lists (asking all the same questions) - in my left hand, but I guess they just HAD to have it, hand-written on a new pieces of paper?
She tells me - "If you can't fill it out sitting where you are, then you are going to need to come to the counter to stand here and do it.
I stared back at her, incredulous - but I DID find my words;
"I am here because I am disabled - if I could stand at the counter, and fill out dozens of pages of paperwork, I'd still be working as a police officer - ma'am." (I did my best to kill her with kindness, figuring that it was CLEARLY not going well already!)
One thing was VERY clear: Her opinion of all of us patients - all the people trying to receive disability benefits - she CLEARLY believes that we're all lying, and that we are all totally and completely fine. Her attitude was clear - we must all be faking it. She looked completely indignant that I had recognized this situation for what it was- weather it truly was a "trick" that they set up, and planned- one that they used to "prove" on video - that these people really CAN walk, stand, etc while they fill out paperwork on a counter, and fill out dozens of pages of paperwork, who knows - but at the end of the day - the REAL SITUATION was that I ACTUALLY could not physically lean on half a paperback book in my lap trying to re-write all this bullshit.
She huffed, hopped out of her seat, and disappeared into the patient room where the doctor was.
After just a moment - the doctor came out (He was the only other STAFF person in the whole office apparently. He was IN an appointment with a SEVERELY disabled woman in a wheelchair, along with her husband....and he walked out, and came directly to me.
"My assistant says that you are having some trouble getting the paperwork completed. I'll go ahead and see you right after I'm finished with this patient, and then afterwards, you can fill out the paperwork - Okay? That way you can take as much time as you'll need - Are you willing to do them after our visit? Can you cooperate with me on that?"
When he asked if I would cooperate - it was pretty damn clear that he was insinuating that I was "being difficult" and that they were both being fake. It was very uncomfortable.
I held up the paperwork that I'd brought with me and I told the doctor;
"I brought all of the papers with me, already filled out - but she said that I still nee..."
He cut me off -
"Well, we can go by what you brought with you during our appointment - and afterwards, you can fill out the rest of the paperwork we need while you're still here in the office when we're finished. They have made some changes, so I will need the new forms done before you leave - k?"
And with that, The Doctor spun on his heel, disappeared back into that room and I sat in uncomfortable silence - unsure if I should continue trying to sloppily write on the bumpy folding chair surface next to me (all hunched up and leaning over in a REALLY awkward position) - because the reality was.... neither of them had actually addressed that there was no desk or table where I could sit to write- and I wasn't going to get an answer about a clipboard.
Just then a new patient, an older man comes in from the parking lot:
"Do you have an appointment today?" the nurse/receptionist/assistant asked him.
"Yeah, at 3:30," he told her.
"The doctor is going to see this patient out of order because of an issue going on with her." With that, she hands him the same stack of forms she'd given me. "Oh, and I'll need your prescription medications. You can fill the forms out here at the counter," she gestures to him, offering him a pen. "Sorry about the wait, but he'll see you as soon as he finishes with the other patient."
The man shrugs, hands her his pill bottles, and leans on the counter to start writing- and she shoots me a nasty look before turning her back as if to say "See. Everyone ELSE has no problem following the rules." And yeah- there he stood, at the counter, filling out the paperwork... he was still standing there nearly forty minutes later when I left.
It was SO uncomfortable- and she had made her point (to everyone within ear shot):
*I* was being a royal pain in her ass.
Anyway - Unfortunately, dealing with the office staff was bad enough- sadly, my entire visit with the actual doctor wasn't a whole lot better!
The doctor finished up and called out for the next patient just a few minutes after that whole thing went down. I don't know if the assistant didn't hear him or if she had just decided that she was no longer going to deal with me - she never came back with Mr. Counter Guy's pills, nor did she come collect me for my appointment. Instead, after calling his assistant twice, the doctor came out, grabbed a chart, and he asked me to go ahead and come back with him, into the patient room.
For the record - they make the only operating patient room, the one absolutely the farthest from the front of the office. I don't believe that is an oversight or a mistake either. I know for a fact that he was following me down the hall, watching me make my way back to the room.
Oh - and those forms that were "sooooo important" that I completely re-write by hand?
Nope: He used the copy machine right there, he copied the typed papers I'd brought with me to the appointment, and not another word was spoken about the paperwork. At the end of the appointment, he also went out and collected my prescriptions himself and returned them to me.
So anyway - Doc goes through a whole spiel about how they video tape all of their social security appointments. He tells me that it's his job is to determine how my symptoms and my injuries / illnesses may preclude me from being able to work (but lets be clear -these doctors are hired by and paid for by the Social Security administration. Their ENTIRE function is to "prove" that we aren't disabled.
One woman in the waiting room had joked that a man could come in on a stretcher, with two paramedics doing CPR - and the SS Doc would still find that guy "Able to Return to Work". (She was probably right. These SS doctors, no matter how nice they may seem - are NOT here to help you get disability payments.)
Doc explains the Appointment Structure to me:
One other thing I should mention - As far as his likability- this part didn't have ANY affect on my opinion... but it did end up affecting our communication, and that's why I mention it. The doctor I was sent to - it was clear that his first (Native) language was not English. He had a thick accent that made him somewhat difficult to understand. He also seemed really uncomfortable about touching my chest (when listening to my heartbeat) - he was very awkward and wouldn't make eye contact with me when he was standing closer to me. It seemed to be a cultural thing. Also I tend to speak quickly. In just the first few minutes, he asked me to "slow down" when answering questions and he misheard and/or misunderstood things I said, reminding me that I have to slow down, and carefully correct things, so we communicate.
My feeling decently about the doctor didn't last long.
We started in on the appointment by his skimming through my list of diagnosis - he seemed to ask several different times what condition I have that is causing all of my loooooong long list of symptoms - and he didn't seem to be getting an answer that he liked. When he wasn't hearing a condition that he felt would explain all those symptoms, he seemed to be getting exasperated.
I explained that my main issue is the Ehlers Danlos Syndrome, and all it's comorbidities - but it was clear that he'd never heard of it, because he shrugged it off as if I'd said my main problem was "seasonal allergies".
We get to the end of my list of ailments -
Crohns Disease (which has been in remission since 09), Ehlers Danlos, POTS / Dysautonomia, Hypothyroidism, Mast Cell Activation Disorder, Interstitial Cystitis, chronically low Vit D, ADHD w/ Brain Fog,- Plus I feel its important to discuss the constant joint dislocations and all of my ongoing symptoms since they very much vary from person to person and they are, afterall, why I am disabled and can no longer work in the Law Enforcement Career that I absolutely loved. (he had a blank look on his face as if he didnt hear me, or didn't understand at that point.) I felt Chronic pain, chronic fatigue and insomnia caused by all of those above conditions.
He doesn't say much... until page TWO. As soon we're going through my medication list... he seems utterly confused by all the medications I'm taking.
"Why the Vitamin D4?" - "My vitamin D levels are chronically low because of the Ehlers Danlos Syndrome. It causes severe chronic fati..." He cuts me off.
"I don't need a health-class lesson today, ma'am," he says. (Okay... well - in fairness doc - you JUST asked why I take vitamin D. What reason would i have for taking vitamin D OTHER than "my vitamin D levels are low...."??)
"And the Vyvanse?"
"That's my ADHD medication... but it also helps to control the chronic fatigue, the chronic insomnia, and the inflammation from the MCAD and the cystitis."
On HIS paper I see him jotting down in red-pen next to my listed Vyvanse medication - all he writes is "ADHD". So clearly he's not even really listening to what I say...
So anyway - we get to "Morphine" and "Dilaudid" - a long acting and a short-acting opioid pain medications - both I've been on for nearly 5 years, with no changes to my dosage (except early on, I voluntarily switched from oxycodone to dilaudid after a bowel obstruction nearly killed me and I had emergency surgery. I also had gone from SIX pills a day for breakthrough, down to FOUR - completely voluntarily (bc i was ending up with meds leftover at the end of the month - silly stupid me back then thought that it would be best to ask the doctor to write me for less meds).
Anyway - it is QUICKLY apparent that the doctor doesnt agree with my being on the opiates.
"Why the Morphine? The Crohn's?" he asks.
(Now - mind you - the diagnosis - prescribing doctor and reason for the medication is RIGHT in front of hin on the paper - so....) But I answer him anyway.
"The morphine is the long-acting medication that I take every 12 hours to lower the severe chronic pain in my low back, hips and limbs from a 9 or 10 out of 10 to a 3 or 4 out of 10, on most days."
"For back pain," he says (and writes) - oversimplifying everything I just explained. He flips to the page with my labs/scans/tests.
"MRI shows nothing - no bulging disk, no spinal stenosis, no curvature, no herniations... what is it that you say is wrong with your back?"
"The orthopedist has explained that my back pain is caused from my hips constantly subluxating and dislocating - as well as the ligaments and tendons being constantly injured from the dozens of dislocations and subluxations every day."
I hesitate to explain to him what Ehlers Danlos Syndrome is, because he's already snapped at me for giving him a "health lesson" - but this doctor could determine the FATE of my disability !
So I do - I tell him that it was explained to me - that Ehlers Danlos Syndrome causes faulty connective tissue, and that because my hips are very hypermobile and extra elastic- that they constantly are moving in and out of place, which causes a great deal of pain as they pull muscles and tear tendons and ligaments. I explain that my pain management physician was the one who explained to me that I had lived all my life with this - but that I had not had any ongoing pain or problems until I was near the end of my pregnancy with my (then 6 yr old son).
It was like the doctor only heard that much.
"(Reading off my medication list) So you've been on morphine, oxycodone, dilaudid... since your son was born..... because of hip pain from your pregnancy."
"I was on oxycodone until the emergency surgery," I said pointing to the paper, "Now it's been replaced by the dilaudid, which hasn't caused any other bowel problem...." I explained.
"How old is your son?"
"Six," I told him.
"So how long do you expect that you'll be experiencing lasting pain from that pregnancy?" he asks me, "How long do you expect to stay on these pain medications for this?"
It VERY much comes across as if he's mocking me and he's incredulous - like how in the WORLD has this girl pulled off such a crazy SCAM - getting pain meds for pain from a hip problem that happened SIX years ago. He's not getting it - AT ALL.
I try to explain- he's just not hearing anything I'm saying. Clearly he doesn't understand, or he doesn't BELIEVE in my condition - and he;s supposedly an orthopedist.
So what exactly am i supposed to do with that? The language barrier - while fairly mild - was still a problem because he clearly doesn't grasp the nuances of communication...
It's like the difference between a deaf person signing a sentence and a hearing person saying a sentence -
I might explain- "I walk my dog every day around this time."
And a person signing in ASL (basically) "Me. Walk. Dog."
When a person isn't hearing all of the filler- they over simplify everything you say to them - and it was clear that if he doesn't understand that I've got EDS and my joints dislocate everytime i move - with every step I take- in my sleep...
A normal person dislocating ONE TIME is a horrible ordeal - they may be out of work for a week or more, and in a sling, or on crutches. And here I am - dislocating body parts ALL DAY LONG - dozens of time per day.... and let's be clear... I have overly stretchy connective tissue that ALLOWS these dislocations to HAPPEN all day long- but that doesn't somehow mean that they don't HURT!! Dislocating your knee five times in one day doesn't somehow hurt LESS - in reality - it hurts MORE - because you've had NO TIME to let the tendons, ligaments, nerves, inflammation, etc to CALM THE F DOWN before you are RIGHT back there, having the same EXACT injury again!
While you've taken a week off of work to stay off of your bad knee- and have been icing it, taking advil (maybe even a couple days of percocet back when doctors used to actually give pain medication out for short-term injuries) - i'm over here dislocating MY knee, and then I have to finish walking to the toilet- then stand BACK up, only to have it dislocate AGAIN - twice - all before I can limp back to my couch.
How any doctor can look at us -and tell us that we're "extra stretchy" so these things "shouldn't cause us pain" (and i've had FIVE different doctors in fifteen years of my life try to tell me that bullshit - not just this one guy.) - I'd love for them to try to actually explain this insane belief - to try to rationalize it.
My nerves are not different. I'm not fortunate enough to be a person incapable of feeling pain - other than the fact that my shoulder can fall out just because I've reached up to put my seatbelt on - it doesn't make it ANY less painful than the time you dislocated yours - violently - while playing football.
When we got to the part of the visit where he actually examined me - he commented multiple times on just how incredibly flexible I am - how I bend well past what is normal. (No kidding, dude. Pretty sure I've BEEN telling you that). Then - as much as I don't want to encourage it - I decide to do my one party trick - bc its shocking, but it's NOT painful. I rotate my foot all the way 180 degrees inward - I hope maybe it will open his eyes. Instead- all he takes away from it, is that that one thing ISN'T painful for me so all the dislocating might not be as painful as i say it is...
At one point while manipulating my leg through a normal range of motion - my hip and ankle dislocate - in his hands - my joints are COMPLETELY under his control - and he's HORRIFIED.
I reacted as calmly as possible. It's my instinct to immediately shift my weight and to move in whatever way is necessary to put the joint back in place and that's what I do as soon as it happens - mainly because it hurts badly when it's out of place and it hurts going back in - until its fully seated, it will hurt for several hours. He's HORRIFIED that he's felt my joints dislocating right in his own hands, yet he still cant seem to grasp my disorder. It's time to give up on getting him to understand or care.
He asks me to do lots of things- to bend, sit, reach, walk, squat, grab, etc - i tell him - if any of these things are going to cause me to dislocate or to cause me a lot of pain - I'm not going to do them. If I was stopping my child from running out in front of a car- yes- I could run - but I'd hurt myself and I'd injure several things, and I'm not going to do that for the sake of a doctor's appointment.
It's not until my FOURTH rejection comes in from Social Security - that I read the official report from the orthopedist.
OVER and OVER again this sentence appeared on the state doctor's evaluation:
"I requested that the patient do -----. The patient then refused to attempt to ------. The patient did not have a visibly apparent reason why she would be incapable of performing X. It is my opinion that the patient could reasonably perform this action and therefor, is not eligible for SSDI and is capable of returning to her previous employment."
(As a reminder - my job was A POLICE OFFICER. So with my constantly dislocating joints- this clown thinks i can go back to carrying a gun and chasing bad guys. Cool, right?)
There was only ONE place on the entire report where he noted, in sloppy handwriting
"The patient stated that while she could possibly do these actions, they would be likely to cause a joint dislocation, which would cause her pain, and therefor she refused to even
When I finally got my hearing - after FIVE full years- the first thing my lawyer did, was address letters from my actual doctors, and he eviscerated this guy's total lack of knowledge of EDS - he had the entire evaluation thrown out and the judge entered an opinion into my case that my decision was FULLY FAVORABLE - that my condition is completely debilitating, that I am not capable of working even light part-time work because of the extent that my condition affects me physically and mentally (distracting, losing sleep, short term memory less, being in pain is distracting as hell.
The judge also made a note that the doctor should be reviewed - because his repeated requests for me to complete behaviors which his own notes (of me dislocating in his hands when he was moving my hip and leg during his exam)- his then asking me to do things like squat, crawl, lift objects, reach for things, etc- was completely out of line, dangerous, unprofessional and that the judge wanted him to be reviewed and reevaluated that his practice may not be a good fit for a state evaluator for future cases.
I sincerely hope that both he and his receptionist / assistant / nurse are no longer in the medical profession at all - they were both horrible at their jobs and it was clear that they ONLY existed to prove as many patients as possible do not deserve SSI / SSDI. The whole thing is a disgusting SCAM and an insult to anyone who is sent to these doctors in the first place.
How can SS possibly justify that their ONE doctor's opinion- made during a SINGLE visit - is weighed as EVERYTHING when it comes to them making a decision.
By requiring these visits to THEIR doctors- Social Security is saying that the only REAL medical opinion on your case that matters is this one guy - who has never met you - who knows nothing of your history - and who has a VESTED interest in claiming that you are NOT actually disabled.... and so they listen to this SINGLE opinion - they REJECT almost everyone - regardless of years and years worth of examinations, diagnosis and treatment records from other ACTUAL specialists who have cared for you over the length of your illness.
It should be illegal: It's certainly NOT ethical or fair or right in any way.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.