Hi everyone. I have bipolar II, PTSD, OCD and a couple of other diagnosis. I've seen the same psychiatrist for over 20 years. Was awarded SSDI in early 90's, fought hard to return to workforce, including going to school to get a degree. Went off SSDI and worked for approx 10 years before my mental health issues became acute again. Filed for SSDI again in 2009. Denied, denied, ALJ (denied), Appeals Council (denied) and finally Federal Court (remanded). Still waiting on new ALJ hearing date, which I'm sure the decision will be *denied* again.

So imagine my horror when I did an internet search for my name (I read where this is a good idea for everyone to do to see what's floating around about you on the internet) and to my absolute horror saw that my SSDI case and fed court judge's decision is published on the internet by some data mining company!!!!

Without paying anything you can see the judge's decision for remand, but pay $8 and you are privy to my psychiatric history, a good portion of my psychiatrist's records, MY DIAGNOSIS, meds, and the federal judge's and psychiatrist's opinion that I cannot work due to my inability to stand the stress of working with other people. (In reality, I cannot work for bully bosses and in toxic environments where this seems to be the norm these days.) Nor is it easy for me to make it in to work when I'm feeling particularly suicidally depressed.

This publishing of records online is all new. These new data mining companies are claiming that court records are open to the public, so they are not breaking the law by publishing them on the internet. Currently they are publishing federal appellate records....that's why my case was published. To make things worse, I am only one of two people in the US with my name. I have a very unique name, so it is not going to take a genius to figure out that this is my court case, even though my SSN and birthdate are not published on the record.

The way I see it, I am screwed. If I get denied at my remand hearing, which I am expecting to be, and if my condition improves, I will NEVER be able to get a job with this info easily accessible to any employer that does any kind of basic internet check on me.

I'm now paranoid, afraid to go to my second ALJ hearing, can't eat, can't sleep, don't want to leave my house, talk to friends or family. Nothing. Just waiting for someone to call me a freak and throw food at me or something. I'm just devastated

It made me so sad and mad to read your story. I have no experience in law but it seems like they could seal your records in this case. Have you discussed with a lawyer ?

Please keep us posted and I'm sure others will follow me on this thread that have suggestions for you.

Stay strong and please let your friends and family in to help you deal with this

And we're here for you too...this is a great site with wonderfully caring people

Debi from Georgia

Thank you Debi -

My primary attorney can't be bothered to return my calls. He referred me to the attorney who filed my federal court appeal - that attorney has been somewhat responsive. He asked me to get a letter from my psychiatrist stating that having my private medical records published on the internet for the world to see was detrimental to my mental health so that he could ask federal court judge to seal my record. There are no guarantees that federal judge will do so, so right now I'm in a holding pattern. A horrible, nightmare-filled, panic attack holding pattern. I can't stop crying. Right when I think I'm going to be OK, the tears start again followed by another panic attack.

I really could use some encouragement and moral support right now.

I think I'm sinking into a really bad place. I'm kind of scaring myself. I hope I don't have to go inpatient. It's been 20 years since that was necessary. Don't want to experience that ever again.

I would have never agreed to take my case to federal court had I known this would happen. Actually, I was going to just let the whole thing go after the appeals council denied my appeal twice. I ignored the letter from my primary attorney to call the fed court attorneys, as I'd had enough. I thought the whole ordeal was over. But the fed court attorneys CALLED ME AND TALKED ME INTO IT!!!! I told them I'd had enough of the waiting, the abuse and contempt from the ALJ. I told them I was weary and tired. They told me to "keep up the good fight."

So this is what I get for listening to them. I think a lot of people are going to literally crap themselves when they realize their psychiatric records are on the internet for the world to see.

Please help me get the word out that this is happening. I think the data mining companies started publishing SSDI federal appellate hearing records in Oct 2013 so this is a brand new thing. I hope nobody else will be victimized like I am.

If the federal judge won't seal my records (which I can't believe he wouldn't....but then again trying to figure out any judge's logic is an exercise in futility to say the least), then I guess my last resort will be to change my name.

Seriously...at least criminals can have their criminal records expunged after a few years. I haven't done anything wrong. I haven't broken any laws. Yet, this will be attached to my good name on the internet forever. I know that I shouldn't be ashamed of my illnesses, and I'm not. But let's face it: There are plenty of people out there who WILL discriminate against me, deny me jobs, etc. I will become even more marginalized than I already am. This is precisely why we have HIPAA laws. I'm just flabbergasted.

That is, unless the federal judge is willing to be nice and help me out. My faith in judges is not good at all.

Dear Wheatscapes,

I am so very sorry to hear about your situation. It is just awful. NO one wants their private personal medical information on the internet. Well, I guess I should not speak for "everyone" but I would guess that most people want to be able to maintain privacy about their medical conditions whether they be physical, mental, or both.

Court records ARE public documents and I have seen many Federal disability cases online. At the very least, I think one's name should be redacted. No one needs to know the identity of the person. Seems to me that the laws involved here are contradictory to each other. Public record of court vs HIPPA. I guess the HIPPA laws go out the window when we sign the original "release" when we first file for disability on the original application and then are left with only the public record law in place.

I happen to be a "private" type person and this type of issue really hits me hard. My privacy means a great deal to me so I can only imagine how you must be feeling about what you discovered. It amazed me to find so many cases just like yours posted on the internet.

I wish I could offer you some words of comfort but nothing would comfort me to see my claim for all the world to see. I feel your discomfort. I really liked that you mentioned that you are not ashamed of your illness but that does not mean that you must share it with the world and certainly not without your express approval to do such a thing.

Maybe the community here could write our senators and congressmen to write some legislation to prevent the disclosure of disability claims as public record or at least ensure that names are redacted.

While I am not surprised about your post since I have seen many such claims on the internet, that does not make it any less horrific.

You have support from us and I hope you can get some help dealing with this issue.

I am also asking that the entire community take action to contact their representatives in D.C. concerning this matter. NO one's medical records should be appearing on the internet, especially with identifying information included.

I am utterly saddened to read that this is happening.
You've done a good thing by coming here, as this is new to me and I'm going thru the SSD process as well. (first time for me) For all I know maybe mine is out there also.

But most of all I just wanted to say - Please don't get to that dark place. From one to another who knows how ugly that place can get - please don't let this take you there. Don't let 'them' do this to you.
Be a victor in this one area and it'll give you much more credence over what the publicized court documents reveal.

Caring,
Rae

Just to be clear, this is only an issue if you've filed a case in Federal Court--which is a very small percentage of SSDI/SSI cases.

For those that file an SSDI application early enough on, they can consider starting a second application instead of filing a Federal Court case if their eligibility has not elapsed. For those pursuing SSI claims, starting a new claim should be a serious consideration if they value their privacy.

Dear wheatscapes,

My hope is that the judge either removes your name or seals the whole file and has it removed from the internet.

I believe LIT LOVE is correct that this would only happen in Federal cases but WE ALL need this information to pass on to others.

I actually pulled my name up on the internet to see if I could find anything on me I had no idea there were so many people out there with my name......since your name is unusual I can see the seriousness of your situation.

I don't remember if you are taking anything for depression but if you are not it's a good time to ask for something. Please use any tools available to you to get through this.

We are all here for you and will continue to be as long as you need us.

Don't let this define who YOU are. I sense you are a very good hearted person going through a very rough time.

Take care and let us know how you are doing and we'll do our best to help you through this.

Debi from Georgia

Debi - I am on a plethora of psych meds. I don't want to add another, so I will just have to get through this the best I can. I think my biggest problem is ruminating. I can't seem to get this out of my mind for any period of time. It was the first thing I thought of when I woke-up this morning.

I try to exercise a lot, keep myself busy. We are selling our home - our dream home - that we are no longer able to afford due to being small business owners in a horrid economy. My husband is interviewing with a company in a different city. No help from me since I can't currently work. So along with all of this I am having to pack, look for a new place to rent in the new city, etc. It's all just too much.

Things just keep going from bad to worse. I'm really trying to hang in there.

Mornings are the worst. Afternoons a bit better, especially when I keep busy, but when I least expect it the "problem" enters my mind and my heart rate speeds-up, and I become scared. Thankfully, I'm sleeping better than I have been since I discovered this stuff. If I can sleep that's a huge thing.

I guess I just need some perspective. I tried making a list of things that could be worse, and came up with a LOT of things:

1. At least I haven't killed anyone
2. At least it's not a criminal record (but even this can be expunged)
3. At least it's not a nude photo or video of me
4. I'm not in jail
5. Everyone in my family is healthy

.....you get the idea.

At the end of the day, if the judge refuses to seal the record or at least remove my name, I will change my first name. It's only a small change - I will be adding two letters to the front of my first name, which will actually make it what people think it is when I'm introduced to them. The funny thing is, I have actually been talking about doing this change for a long time. I've never been very fond of my name - it's a shortened, abbreviated version of the correct name. Kinda like naming your kid Clay instead of Clayton. Or Ricky instead of Richard. I will still go by my original name, but for the purposes of publishing my name, like in a church directory, or applying for a new job, I will use my new name.

I've done a google search for the new name, first and last together, and the court case doesn't come up

Then you've solved your own problem as I see it If you had already been thinking about changing your name then by all means go right ahead and do that ! Great idea I think.

And I'm truly sorry about your dream home......I'm sure you will take many happy memories with you.

Your list is good.....need to keep those things in mind when you feel bad......and keep adding to it when you find new ones to put on your list.

My mom is 82 and she has build an addition on to our house for her. We move her tomorrow and it has been very devastating for her. There is only one house between ours and hers but she is just so hurt about having to leave it. I pray that I can help her accept that moving is in her best interest. I do feel for her as I do for you having to up and change cities.

Debi from Georgia

Thanks, Debi. I'm feeling a bit better about my situation now. I can't help but think that publishing people's SSDI court cases, especially the mental health ones, is a punitive action on behalf of the courts. As someone stated above, very few cases go to Federal Court. You'd think they could seal those very few that get there, eh?

A weird coincidence: When I found out my med records were online, I freaked out and called my attys crying and saying I don't think I can go through with the second hearing before the ALJ due to being so traumatized and devastated. Within two weeks I get a letter from SSA informing me a court date has been set in my case - in 8 weeks.

Kinda makes you think that the attorneys and judges are incahoots on all of this, huh? I mean...I've only been waiting 16 months to get a court date....

It feels good to take back my power from these people. Worst case scenario - I end-up with a name I've always wanted.

And it's nice to know that there are kind people out in the internets like you and the others that have posted here. I'm glad I found this community. I think I will become active in other discussions. It's always nice to find people that live with the same issues you do...makes you not feel so alone.