When I was “younger” I trusted my (ex) doctors were taking care of me for years; until I realized they weren’t actually paying attention to my symptoms–only making assumptions–and not taking proper records. Because of that, I have been fighting for Social Security Disability over ten years later–and I’m guessing I’m going to be denied again this time around (it doesn’t stop hurting after all of these years, you just start getting used to being rejected… Personal tip: Never give up fighting for Disability if you believe you honestly and truly deserve it).
Whether you’re disabled or not, it’s important to make sure that your doctor is documenting your case properly by noting all of your symptoms–including any and all phone calls where you discuss your symptoms (some doctors don’t keep notes of calls with their patients–losing very important information at times). If you doctor isn’t keeping proper records, it could mean longer wait time for a proper diagnosis–and treatment–which could even mean the difference between life and death or disability…
As far as Disability and the Social Security Administration, it doesn’t matter how disabled you are in real life–if it’s not on record and they can’t read how severely ill you truly are, you will not be approved for SSDI. The guidelines are very strict, and interpretation of these records depend on whether you’ll be approved for Social Security or not… Even if you have medical records as tall as you are… if your records don’t detail every symptom, official diagnosis, and the scale of your disability, you will lose YOUR money. Even worse, if you become disabled and still haven’t been diagnosed, you will have no chance at winning your “benefits” if you don’t get your answers before your DLI (Date Last Insured–The SSA’s term for the final day of being “insured”, ie. end of premium date). It doesn’t matter how many times you went to your doctor, or how hard you tried to get them to help you. Your relationship with your doctor, and how they keep record of your illness(es) will be the deciding factor in more ways than one.
It almost seems a lifetime ago that I was fighting for answers for all of my confusing symptoms.
For years I waited patiently for my doctors to come up with an answer to what was happening to my body, and nothing really happened. Well, actually, one particular doctor especially did keep trying to send me to a psychiatrist because, of course, my symptoms were “all in my head” (and a few other choice phrases). I was in my 30’s, and according to them, “too young” to be having the types of complaints that I had.
In fact, if it wasn’t for a doctor telling me to look up Fibromyalgia online that April in 2006 (that he finally diagnosed me with–then proceeded to tell me it was a “throw away diagnosis”)–I probably would have been a permanent resident of a psychiatric hospital by now because of them.
Literally. Pretty scary, right?
When I finally learned about the vast amount of quality medical information that was available online, and realized that Fibro didn’t answer all of my questions, I started researching my symptoms on my own.
It was about six months later that I learned my primary physician had lied to me about not having Multiple Sclerosis–because he never actually tested me for it. Had he tested me for it back in 2005, I believe that I may not have progressed with my illness(es) as much as I did after the meningitis attack. After he told me that I didn’t have MS, I even asked him if I was brain damaged because I wasn’t able to concentrate, comprehend a lot of things; my speech would slur and more. His reply was simply “no”, and he left the room.
Researching my symptoms changed my life for the better. It wasn’t easy at first–most doctors don’t appreciate a patient doing their own medical investigating. In fact, a lot of them frown upon it.
But, some doctors actually do appreciate it as long as you are well informedwhen you present it to them.
When I realized that my doctor(s) weren’t paying proper attention to my medical issues, I finally got away from the entire medical group four years later (it would have been sooner had I not had a case already pending about my disability). You could say that the treatment that I, and some of my family members received could have been considered malpractice because of the undertreatment and misdiagnoses that were taking place on a nearly consistent basis for several years.
Since handpicking my own doctors I have been diagnosed with Multiple Sclerosis, Systemic Lupus, Ehlers-Danlos, Epstein-Barr–the list is a page or two long so I won’t bore you with the details.
Check out the link to the article in the October 2016 issue of Neurology Now that agrees that patients want more input when it comes to their health. It offers some great tips to have better interaction with your physicians – and hopefully get a more timely diagnosis.
I had a follow-up doctor’s appointment a while back. I told him about the last two months health-wise, and brought him up-to-date with my most recent Social Security Disability Hearing and told him that it probably wasn’t looking good for me… Again. As usual, he couldn’t understand why I was still fighting; and then we continued on with my appointment.
I was about to leave the room and something popped up in my head (I love how my brain works now). I stopped, and asked him if he ‘knew of a form I read about online that Social Security apparently wants from doctors. That for some (ridiculous) reason, the SSA doesn’t really give too much weight to short letters written from the doctor; but this “Residual Functioning Capacity” form (linked below) is pretty important… Apparently, it can be the deciding factor in some cases?’
I don’t think my brain said it as eloquently when I spoke, but luckily he understands me–even when I babble and slur.
It turned out though, that he didn’t really know anything about this form (he ‘thinks he heard of it’, he claimed, but asked me to send him a copy)! I can’t blame him for not really knowing about it honestly. A doctor’s word should matter to the courts when it comes to treating and supporting his or her patient–and Social Security should use any records or letters put into evidence, as long as they detail the diagnoses and note whether or not they consider the patient permanently disabled.
But if a doctor’s letter doesn’t entirely count as far as the SSA is concerned, why hasn’t this practice been changed?
What concerns me is how many doctors don’t seem to know about this form (or how to file for Disability). They believe Social Security should take their word as gold that their patient is permanently disabled. But Social Security is basically stating, ‘Your letter and word as a physician isn’t enough, we want you to fill out an eight page form explaining, in detail, what their disability entails’.
With today’s technology, why can’t someone contact the doctor if they have any further questions (beyond the medical records)? Wouldn’t it be better to have a more personal account of a patient rather than make them fill out a detailed, “Can your patient lift 5/10/20 pounds on a regular basis – if so/not, please explain” form.
Instead, everyone’s fate rests on the hand of the SSA’s expert medical witness’ testimony (whom may or may not specialize in your illness(es)) by reading only the doctor’s notes–yet not hearing from the patient themselves. Therefore, they are basing their opinions on medical records that may or may not be detailed and complete.
Can you imagine the scores of people that keep getting denied Social Security and are constantly struggling, becoming homeless, and even dying because this ONE FORM wasn’t filled out by doctors–most likely because they didn’t know that it existed in the first place? (Note: When I tried finding it through the Social Security Website, I kept getting a “404 Error” message every time I tried to reach the page – It does exist though – see below for the link!).
PLEASE, everyone, SHARE this page! Tell your friends that are fighting, or about to start their fight, for their Disability benefits to print out the RFC form linked below–and make sure your doctor gets a copy. Have them share it with their colleagues!
Help stop this insanity!
There’s so much I would have loved to have known when I became ill enough to be ultimately forced to apply for Disability. I truly hope that this helps someone so they don’t have to go through what I have… and still am because of poor medical treatment and recordkeeping.
I eventually began searching online, rather than the SSA website for the form, and finally found a copy that can be printed out HERE (pdf version). I’m hoping that doctors will start hearing more about the RFC form–and start helping their patients with disabilities win their Disability fight in a timely manner by filling it out.
I’m hoping even more that Social Security catch up to the times and realize that today’s doctors aren’t old school like Social Security still is (Come on, the system has barely changed since 1935–Over eighty years!). Doctors just don’t have time with the amount of patients they have to take care of today to fill out eight-page reports. Detailed notes (including via telephone) and detailed record keeping should be able to properly show a patient’s health status without question; while a patient’s testimony should be taken strongly into consideration–especially if a case lasts longer than five years.
No one should have to wait more than five years for their benefits.
Both the Social Security System and the medical industry need to create a simpler system that both can work with, so people that are truly disabled get their benefits in a more timely, and less stressful manner.
It is our money after all.
Until the laws get changed though, get that RFC form to your doctor’s office and ask them to fill it out along with your Disability application.