[Alizah64]

Hi, first time posting.

I was approved for SSDI (Disability) in 2015 for rapid-cycling Bipolar Disorder and C-PTSD. The process took about 6 months.

I'd actually received the diagnosis of "manic depression" (what they called Bipolar then) way back in 1980, as a teenager. While I did have a history of several hospitalizations and a suicide attempt, I had still managed to work full-time in a professional occupation all those years until I was laid off in 2014. In other words, I'd had a significant psychiatric history, but I had also been very high-functioning.

The "high-functioning" ended after my layoff in 2014, which happened at the same time as multiple other traumas and losses. I had a psychotic break, and even with intensive therapy I have not regained any level of functioning. My work actually held me together all those years, and if I COULD be working right now, believe me, I would.

All that said, over the past couple of years it's been the consensus (between my doctors and me) that my original diagnosis was wrong. It was never Bipolar, but severe anxiety, wrong meds and multiple traumas I had never had the chance to heal from.

I know a big reason why my SSDI application was approved was because of my Bipolar diagnosis. Bipolar is one of the few conditions that is understood to be severe, chronic and unlikely to improve, and I was already in my 50s.

But now I'm anxious that if my diagnosis is no longer Bipolar, they're going to think I should be back at work. In reality, I'm at a much lower level of functioning today with the C-PTSD than I was with the Bipolar disorder. But it seems their decisions have less to do with reality and more to do with labels.

I have not been contacted or anything; my case has not come up for review. But I don't know how this works. Will they be checking at some point to see if my diagnosis is the same as in 2015? Or?

Thanks in advance.

I don't think I'm the best person to answer, but I'll share about my limited contacts with Social Security.

I was approved for SSDI about 8 or 9 years ago. I actually forget. After approval and my payments began, I didn't hear anything at all from them for years other than the annual Medicare catalog and an occasional new Medicare card. My first contact from them was a short form CDR. Then years later I got the long form. I regret that I did not make copies of them. I don't recall if the forms asked me to list my diagnosis. I don't believe they asked for my psychiatrist's or therapist's signatures. I think they basically just wanted to know if I started to work (or study) again in any capacity, and how much (if at all) my functioning had improved or worsened. At those times my functioning had not improved, and it really hasn't improved much since. At least not enough to work more than an attempt at a very limited volunteer job, which I am currently unable to do, or 2 hours per week adult school class for a few weeks. I can do chores and errands, but not even those that perfectly. My ability to handle many basic ADLs has improved, but not fully.

I have no idea when I will hear from SS again. I have heard others say they had some kind of interviews or maybe their doctors were contacted again. As I wrote, that hasn't happened to me. I still have major episodes, especially mania, from time to time, though haven't been hospitalized since getting SSDI. Honestly, that's why I haven't been hospitalized, I believe. I fear that hospitalizations will occur again if I go back to work prematurely. Even a slightly stressful vacation can trigger a full blown episode, or at least a few steps back.

My only diagnosis is bipolar type 1. I do have a history of psychosis during several episodes. I, too, sometimes have major issues with anxiety, and I have a tendency to have mixed features as part of manias. When I was approved for SSDI, I had experienced 10 psych hospitalizations, one including ECT and many PHP/IOPs. I had tried to return to work part-time on several occasions between IOPs/hospitalizations (one reaching full-time briefly), but always became hospitalized again, even despite accommodations. My employer terminated me after holding my job for almost four years. I've tried and failed volunteering many times. I've had mixed success with taking adult school and online college classes (one at a time). Right now I feel accomplishment just going to the grocery store regularly or the occasional activity (classical concert, movie). There were points when I couldn't even go to the grocery store.

I am able to participate on these online forums, but have a hard time going to evening in-person groups. There was a period when I wrote in my blog almost daily, but haven't been able to do that much for a while now.

If your doctors agree that your mental health state and updated diagnoses are still fully disabling, I would hope that you have nothing to worry about.

[unaluna]

SSDI would have stated in your award letter how often they planned to review your case - like every 3 or 5 or 7 years, or never. So a change in your diagnosis would be looked at then. But a review is triggered by the clock, not by a change in diagnosis.

Hope thats clear!

[Christopher1990]

That's a strange change in dx. If you are worried about eligibility maybe you could get a second opinion from a different psychiatrist?
I know when my case came up for review, I also had a dx of shcizoaffective, which definitely put me over the edge for maintaining my ssdi.

But, yeah I don't think they would have any way of knowing for the time being, of any change dx

[tecomsin]

I don't have any experience with the US disability system but wanted to lend some moral support. I would also be wondering the same thing if I were in your position. I hope some more people chime in who have experience.

I was a high functioning professional until my breakdown and diagnosis in my mid 40s. I was on a return to work plan for years but my employer pushed me into long term disability and that is where I am now and have been for over 5 years. The longer you have been out of work the more daunting and unlikely is the chance to ever go back too.

[Wild Coyote]

In my experience, when a review is done, if the diagnosis has changed, they fully look into the situation. If your treating docs state you are still disabled, it makes all the difference for your case. The opinion of currently treating docs is a very important factor.

It's not unusual to have a psych diagnosis change like your has, by the way. I am sure SSA is very used to seeing this in cases reviewed.


WC

[Wild Coyote]

Oh! And welcome to PC!

I hope you will find the information and the support you may be seeking.
Please do jump in and make yourself at home.
I hope to see you around the forums.


WC

[Moose72]

So i just had a review at the social security ogfice. I passed. But my pdoc says im sza now. Should i tell her to say bipolar 1 still?

[BipolaRNurse]

Wow, OP, I never knew someone who has virtually the same setup as I do...got approved for SSDI in 2015 after six months, lost job in 2014, and was in my 50s when all this went down. I also had been high-functioning but with the loss of my job, my home, and my social status I went into a tailspin from which I've never fully recovered. So I totally get where you're coming from.

I had a review this spring that turned out NOT to be a review (after looking at my paperwork they decided not to). I recently asked my pdoc if I was still bipolar 1, because the memories of being manic and my hospitalization have faded a lot over the past several years, and he's changed my diagnosis several times. He emphatically said YES and changed it back, said it was permanent so there was no need to try to explain things to SSA at my next review. Which is good, because I only function as well as I do because I live a relatively low-stress lifestyle.

I hope your doctor will help you figure things out. It's so frustrating when the diagnosis changes and you don't know why or how the doctors came up with it. I don't know if yours will get you discontinued from SSDI, but I seriously doubt it. Anxiety can be debilitating.

BTW, welcome to PC! We're glad you're here!

[tecomsin]

Originally Posted by Moose72

So i just had a review at the social security ogfice. I passed. But my pdoc says im sza now. Should i tell her to say bipolar 1 still?

They are both considered disabling illnesses so I doubt it would make any difference. Sza even more than bipolar.

[Wild Coyote]

Originally Posted by tecomsin

They are both considered disabling illnesses so I doubt it would make any difference. Sza even more than bipolar.

I totally agree and this has been my personal experience. Still disabled? Still qualify for SSDI.


WC

[Alizah64]

OMG!! As I was reading this I thought for just a second, "Did I go into a fugue state and answer myself??"

It felt good to read your story ... not that it IS good, but it felt validating. Thank you!

[Bipolarchic14]

A woman I work with is on disability for severe anxiety. So ssdi does cover that.

[~Christina]

I was reviewed once in 6 years. It just asked last time I saw Pdoc and T and the end , Pdoc and T got same letter and they both agree my BP I makes me unable to work and I also have numerous pain that fits there criteria.

It’s almost impossible to live off SSDI that’s for sure.