SSDI hearing judge questioned why I couldn't work

[AlleyCat]

I had to wait 15 months for the SSDI hearing today. I quit working in our family business in the Spring of 2014. I was seeing a dr who kept telling me I just had anxiety and depression. I was able to change drs in 2015. The new dr believed me that something was wrong but didn't put all that in her notes. As a matter of fact, she made horrible notes that said nothing of my symptoms. In the hearing today the judge actually asked why I couldn't work with fatigue and headaches(that's all my records say i had). I'm pretty sure I'll be denied. My attorney said it's a longshot. I never realized I had to make sure my dr took good notes on what I was saying.

I really felt like I was being looked down upon for not working. Like I was just lying or faking it or something. It starts to make me question all my symptoms again. It was really hard to stop working. I didn't think this would make me so emotional but I am. I'm crying over this.

 

[Judee]

I'm sorry, @AlleyCat. That's so heartbreaking. I have my hearing in August but I am not very hopeful but still I know I will be devastated if I am denied.

I have no energy to try anything else. I watch youtube videos on Amazon retail arbitrage and others on eBay selling and even though I manage to sell a few things each year on eBay I could never have the energy to do it as a job.

Saying a prayer for you today.

Edit: Here is a thread where one of the other members got denied. Other members gave him some good advice on where to go from here.

 

[Hufsamor]

I'm so sorry @AlleyCat
Don't question yourself.
They have just no idea, do they...
We have your back
Do your crying and rise your head again tomorrow

 

[AlleyCat]

Thank you @Judee. My husband and son work harder because I can't. My husband also sells stuff on Ebay for extra money. I just feel worthless because he works so hard and takes care of me.

I just thought about it---I married a great guy! I'm so happy I have him.

 

[Wolfcub]

Oh @AlleyCat I am so sorry! That would make anyone cry.
You weren't to know what notes the doctor made at the time. I have never asked or thought about what notes they make! It was remiss of her not to document your symptoms for purely medical reasons. It is important to have a baseline of symptoms to compare with at a later date!

I like what @Hufsamor said. Let your crying out, then dry your tears, and we have your back. Yes we do.

Is there any way you can get those doctor's notes updated to reflect your current physical condition?

And is there a right of appeal ? If so, what is the time window?

 

[geraldt52]

... I quit working in our family business in the Spring of 2014. I was seeing a dr who kept telling me I just had anxiety and depression. I was able to change drs in 2015. The new dr believed me that something was wrong but didn't put all that in her notes. As a matter of fact, she made horrible notes that said nothing of my symptoms..

I hate to say it, but your doctor(s) may have doomed it for you. For the purposes of SSDI a diagnosis of CFS does absolutely nothing for you...what is important is how your symptoms prevent you from working. One of the few ways of proving the severity of your symptoms is a doctors running notes over a long period.

There is no harm in letting your claim play out, but I agree with your lawyer that it would be a long shot given your description of your medical records. You may want to get yourself a new doctor, maybe a new lawyer, and start a new claim ( you can have two running concurrently). Your current lawyer, or a new lawyer, might be of some help in referring you to a cooperative doctor...many want nothing to do with someone trying to get SSDI. A lawyer who specializes in CFS cases may have already worked with a helpful doctor on another case.

Good luck. The frustration can be overwhelming, but you just have to play the game that Soc Sec dictates. They'll do everything they can to discourage you. Don't give up.

 

[nyanko_the_sane]

I really feel for you, I have been there too.

Sometime the anxiety and depression diagnosis is all you need to prove you are disabled. The Social security ALJ will just not take your word for it that you can't work. The strength of your case is in the evidence presented. There is another level of appeal, but this will only re-evaluate the evidence presented at your hearing. If you fear for the worst, your best bet is to start a new application immediately and build a new case.

Social security is supposed to send you a copy of the evidence on file at the time your case is complied, this should have been well before your hearing. Did you get the chance to review all the evidence in your file?

Good luck

 

[rel8ted]

Thank you @Judee. My husband and son work harder because I can't. My husband also sells stuff on Ebay for extra money. I just feel worthless because he works so hard and takes care of me.

I just thought about it---I married a great guy! I'm so happy I have him.

Most cases get denied. Get a doc that writes better notes & appeal. Ask for copies of everything so you know exactly what is in there. If they miss something, you can say “ I noticed you didn’t document (xyz), can we address that today?” Don’t expect them to spend longer than an average patient time-wise with you & make follow ups as needed.
More tips:
https://howtogeton.wordpress.com/

 

[geraldt52]

Just to be clear, there is a big difference between appealing your current claim and filing a new one.

If you appeal your current claim they will mostly evaluate the legal basis of the ALJ's decision, not re-evaluate the evidence presented. They generally accept the ALJ's analysis of the evidence. You can add evidence to the file, but you can't "post-date" it so to speak...you can claim a change in your condition, but you can't change the original evidence of your condition. Your doctor's poor notes just are what they are. If you win on appeal, your benefits will be calculated based on the date of your original claim.

If you start a new claim, you get to submit new evidence, hopefully better evidence, supported by a better doctor...but, your benefits will be calculated based on the date of your new claim. If you win the new claim, you will still lose the benefits for the period between the old claim and the new one...unless you would eventually win the old claim on appeal (which can take many years).

A good lawyer should explain all this to you so you can help to build the best case possible. Doctors don't just automatically do the right things for you to get SSDI, you have to make sure that they do.

 

[Zebra]

Hi @AlleyCat,
I feel for you. I have she'd many tears (and gone thru many boxes of tissue) over the uphill struggle to obtain disability benefits as well as keep them.
I am writing to you via my phone and not the most tech savvy CFSer, but I'm going to try and paste a URL and attach a PDF from the SSA regarding CFS/ME. Both the link and PDF may help you going forward. They contain info for both you and your doctor about what documentation of symptoms helps your case.
I hope this helps!
Z

1. Link: https://www.disabilitysecrets.com/medicine-medication-prescription-drugs-chronic-fatigue.html
2. PDF from SSA attached, I hope

 

[i-lava-u]

I really hope you get your SSDI, but in case you don't:

The appeal, after the Administrative law judge (ALJ) hearing denial, has 3 possible outcomes:

1. The appeals council agrees with the ALJ and agrees to also deny your claim
2. The appeal council feels that you were denied unfairly or evidence was not properly considered. Then, they will send it back to the judge (a remand), with instructions (like x evidence needs to be weighed higher in decision) and you will have another hearing. The judge, with new instructions/considerations will make a decision. You may win at this point, or get denied again.
3. The appeals council feels the judge was incorrect in their decision and they grant you a winning case (this is rare)

*If denied at this appeal, there are 2 more, higher appeals you can go through. If those are denied, you have to start over from the beginning. Any "back pay" you were accruing while waiting, gets wiped out. Start from scratch.

start a new claim ( you can have two running concurrently)

My understanding, is that now (like, in the last year or 2), you CAN have 2 cases running at once, but can only start the second one AFTER a decision has been made from the appeals council stage (if I am incorrect, someone please let me know!)

It was, prior to this, that you could start a new claim (alongside current claim) as soon as you get denied by the ALJ

So, you can keep appealing up to the highest level. If you win, you get back pay as far back as your "disability onset date" (which is up to 12 months before you applied, it will be on your paperwork, the exact date)

You can start over, but you will lose all back pay

Or, you can follow all the appeals with first claim, AND file a second, new claim. You could potentially win one, both or none

(I hope that all makes sense! )

ETA: If you get denied, you would need to find out if your current lawyer even does the higher appeals, or if u need a new lawyer for this. Also, find out if they think it would be worthwhile to keep appealing, or just start over. I would suggest, if you have other diagnoses, physical or mental, do all you can to strengthen up those on paper, along with ME/CFS, if/when you decide to re-apply.

ME/CFS is very difficult, as a stand alone, to get approved for SSI or SSDI.

If you have not researched already, this may be helpful, as to how social security defines disability
https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm
https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 

[taniaaust1]

sorry to hear this, unfortunately getting SSDI is hard for ME/CFS no matter what country one is in. I dont think I'm in the same country as you are (Im in Australia) but the same thing happened to me, my doctors had paid very little attention to noting things in their notes whenever I went in to see them.

I had to keep appealing till my case went to the highest level (my case ended up being sent to another state) and at that point after asking to see what was in my file, I found out that much of my supporting info had also been removed. I managed to contact the one hearing the case who allowed me to send in then what was supposed to be there only days before the hearing. (thank God I'd asked for a copy of what was in the file to then find out what had gone on).

(Misconduct, Im sure this was done by someone I know in the centrelink office who had access to my files and who did not believe in ME/CFS, I'd even been threatened by that person that he'd make sure I would not get onto a disability pension as "ME/CFS is an illness which does not exist" .. this same person probably got others denied too by file tampering and removing supporting evidence). Unfortunately I was unable to prove that guy was the reason for all the stuff missing from my file

At the very top level, fortunately the person who was accessing my case understood ME/CFS and he said I should have been immediately given a pension seeing I was so severe. I got back paid all the money to the point I'd first applied, to the time before I had to appeal.

So anyway it did work out for me in the end but it was so so stressful and I had to appeal 3? times. I had the ones I was working for (I was doing carework for a few hours each week and my own disabled clients werent happy that I was working as I was more disabled then may of them were and struggling to do the job).. write supportive letters that I needed to be on a disability pension and saying just how bad I was when I was trying to worka and I'd do things like phone my boss crying as I'd lost my ability to be able to figure out how to get to someone's place.

best luck with it

 

[AlleyCat]

I so appreciate you all giving such good advice. I have some questions and stuff to say but not today. I think I'm going to have to go back to bed. It's going to be one of those days.

 

[Mary]

@AlleyCat - first, sorry you have to go through all this! I was initially denied SSDI benefits and felt like giving up right then. Fortunately I came to my senses and filed an appeal within the appeal window (barely made it). I didn't have a hearing before a judge - this was in 2003 or so and there was no personal appearance involved.

I won my appeal, but my doctor added an additional diagnosis which was considered on the appeal (PTSD - unrelated to ME/CFS) and I think I won on the basis of PTSD - it was never made clear to me, but I didn't care, just glad I won.

So I know everyone is saying you can't submit more evidence for this claim and I'm guessing they're correct, but you might want to ask your lawyer if new evidence can be presented.

 

[Wolfcub]

This, and someone else (unrelated to ME/CFS whom I heard from yesterday) has brought to my attention the importance of doctors' notes about a patient.
And yet what they write about us, we take for granted, don't see, unless we call for copies of our records, and most often don't know a thing about.

Another angle is (as in the case of this other person I know) it can lead to the wrong diagnosis and to the wrong treatments and follow-ups.
My friend had been treated for foot drop (wrong diagnosis, and unfortunately on her medical records/doctors' notes) Treatments didn't work. The reason for that being she had a completely different neurological condition, diagnosed much later.

It should be standard practice for us to be able to see and appraise what the doctor has written!!

 

[geraldt52]

@AlleyCat

...So I know everyone is saying you can't submit more evidence for this claim and I'm guessing they're correct, but you might want to ask your lawyer if new evidence can be presented.

You can certainly add more evidence, at any time in the process. What you can't do, at least not practically, is effect any change to the evidence that already exists...ie: amend the doctor's contemporaneous notes to reflect something not originally there.

If someone has another condition, besides CFS, evidence of that condition may have been left out of the claim as not being relevant to the diagnosis of CFS...but the totality of someone's condition is very relevant as to their ability to work.

 

[delphis]

I'm so sorry to hear, AllleyCat....
re other evidence, i know my friend was approved for fibro and they left out cfs from the thing all together, probably in part because of positive FM/A test, insurance paid for that test, i think. maybe worth a shot? but hang in there <3

 

[nyanko_the_sane]

I won my appeal, but my doctor added an additional diagnosis which was considered on the appeal (PTSD - unrelated to ME/CFS) and I think I won on the basis of PTSD - it was never made clear to me, but I didn't care, just glad I won.

We already have to cope with having a chronic illness, but then there are the doctors. I think a lot of us have PTSD from having to deal with doctors that just don't have a clue.

 

[Shoshana]

@AlleyCat
I am so sad and sorry, that you were not treated with more respectfulness .
It is all so very stressful and exhausting and discouraging.

But do not question yourself. There is no reason to go back to that even worse emotional state. It isn't your fault. You would never have chosen to be ill instead of to work. I am certain of it.

Others have given you good advice. I just wanted to add my support, too.

 

[Shoshana]

Thinking of you! @AlleyCat