[lunaticfringe]

Anyone else? I got approved only a few months ago but I deal with a lot of negative feelings about it. It's hard when people ask me "What do you do?" or thinking about the few people who know about it and their judgments. I am doing pretty well these days but I can handle very little stress. I just have a lot of guilt about not working and not being a "normal" person. It sucks.

[HALLIEBETH87]

Originally Posted by lunaticfringe

Anyone else? I got approved only a few months ago but I deal with a lot of negative feelings about it. It's hard when people ask me "What do you do?" or thinking about the few people who know about it and their judgments. I am doing pretty well these days but I can handle very little stress. I just have a lot of guilt about not working and not being a "normal" person. It sucks.

I completely understand!! I'm horribly ashamed and to make things worse-my family assumes since I don't work I can do favors for them 24/7. They don't realize small even mundane things make my stress crisis level

[Nammu]

I can't stand the what do you do questions so I divert it by talking about hobbies....even if I haven't actually done the hobby in years.

Don't share that information with anyone. Your status is stigmatized, and it's nobody's business but your own. You paid into that system from the day you first started working, and that system is now helping you when you need help, in ways that most other people won't understand. It's nothing to be ashamed of. Look at it as your right.

[lunaticfringe]

Thanks guys. Glad to know I'm not alone.

[lunaticfringe]

Maybe I should just start saying I'm a freelance photographer since I like taking photos. I spend a lot of time thinking about what lies I could tell about my profession or whatever. The worst thing is that my in-laws are pretty judgmental/do not think bipolar is a real thing and that really bothers me. My partner loves and supports me 100% I just wish his family weren't jerks. Anxiety about my disability status makes me want to leave the house even less to avoid the small talk conversations that more often than not lead to questions about work. Like can't people think of anything better to talk about? I hate feeling so unaccomplished. I never thought I would be 26 and on disability. But...so it goes. My mental health is a lot better than it was a year ago when I was working.

[emgreen]

When I was asked over Thanksgiving I was asked by my GF's sister-in-law what I did. I simply said, "Staying out of trouble." She's free to interpret that however she likes. I don't volunteer the fact I'm on disability &, for the most part folks don't pry once I get to know them.

Originally Posted by lunaticfringe

Maybe I should just start saying I'm a freelance photographer since I like taking photos. I spend a lot of time thinking about what lies I could tell about my profession or whatever. The worst thing is that my in-laws are pretty judgmental/do not think bipolar is a real thing and that really bothers me. My partner loves and supports me 100% I just wish his family weren't jerks. Anxiety about my disability status makes me want to leave the house even less to avoid the small talk conversations that more often than not lead to questions about work. Like can't people think of anything better to talk about? I hate feeling so unaccomplished. I never thought I would be 26 and on disability. But...so it goes. My mental health is a lot better than it was a year ago when I was working.

Excellent solution. I'll give you credit for my merchandise photography until we're investigated by SS and the IRS.

[BeyondtheRainbow]

I just say "I"m an occupational therapist but I'm not working now". I sometimes say that I'm disabled but usually that's not my first choice if I can avoid it.

I have avoided reunions, college homecoming with a friend who really wants me to come, etc. because that question is so awkward, especially when combined with being 40 and never married, never in a serious relationship or even much of a relationship, no kids, etc. Where I went to college marriage is pretty much expected of everyone so it would stand out a lot if I weren't married and not using my master's degree which used to be my defense against not being married (I was too busy with education, adjusting to a new career, etc).

[Cocosurviving]

I just recently got approved. I've had people start to ask me questions like "how was your work day?" I just reply and say I've had a busy day. I recently met a guy and he asked for my number. The "where do you work?" will come up. I've had one family member tell me I'm wasting my degree sitting on disability??? But he gets SSI! I worked as a general social worker and mental health social worker. I thought to say "I'm a retired social worker" but I'm 39. I look real young more like 25 so saying retired people will look at me crazy. LOL

Sent from iPhone 6 Plus using Tapatalk

[Cocosurviving]

Originally Posted by Lefty the Salesman

Excellent solution. I'll give you credit for my merchandise photography until we're investigated by SS and the IRS.

I agree. I would not advise anyone getting SSDI/SSI to go around saying they work. Social Security would not take it as a joke. They would cut off your benefits while they complete an investigation.

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[junkDNA]

Originally Posted by Cocosurviving

I agree. I would not advise anyone getting SSDI/SSI to go around saying they work. Social Security would not take it as a joke. They would cut off your benefits while they complete an investigation.

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i get SSDI and i work part-time. im trying to get into the ticket to work program to get off disability eventually

[Cocosurviving]

Originally Posted by junkDNA

i get SSDI and i work part-time. im trying to get into the ticket to work program to get off disability eventually

I'm aware of the ticket to work. You can earn a certain amount of income but SS tells you what amount you can not go over. The poster was saying she would tell people she was working when in fact she was not. No I not advise anyone to do so. I think it is great your able to work part-time. I hope to do so too. I understand the income on disability is hard to live off of.

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[RunnerIM]

I'm happy you guys posted. I do not want to offend anyone. I would like to understand this better.
I am one of those people that judge people on disability. I feel bad because I do. When someone tells me that, then tells me their diagnosis (people tell me this voluntarily, I do not pry, I'm just easy to talk to) my first thought is "are you serious?" I immediately tell myself not to judge because I have no clue what they are going through, but I still do. I'm bi 1, OCD. My lows are LOW. I have hallucinations, hear things and bouts of psychosis. If I'm on the wrong meds or they aren't working right. I myself can not handle stress. Can not function in certain environments and can lose touch with reality. I still work. My bio dad is schizophrenic and can't hold a job well, but then works for temp jobs. He refuses to sit at home. He does not take meds, that I'm aware of. I really want to understand better. I know I have no clue of your guys support, home environment, etc so I have no right to call anyone lazy. And actually I never think people on disability are lazy, I just feel They are throwing in the towel and taking the easy way out.
I truly do not want to offend anyone I want to be more empathetic and understanding of this illness and how it can be so dibilitating to some.

[Moreta]

I'm having a call with my t on the 17th to make a game plan for christmas. I know people are going to ask what I've been doing with my life, and I'm not really sure what to tell them.

BTW I would rather work, but every time I work I end up in the hospital because I get psychotic and then I get fired from my job. I have tried over and over to work, but it never works out. I am not lazy. I go to the gym every day and work on my artwork and jewelry and sell them. I can not work a 8-5 job. I have been trying to since I was 18 and I'm 31 now. I'm waiting for disability to send me a letter if I'm approved or not. I hope I hear something about my appeal in January. My pdoc and my husband have told me not to work. My husband is very supportive of me not working.

[BeyondtheRainbow]

You offended me. I'll start with that. You didn't SAY all of us on disability are lazy but you sure got that across.

But let's see.....You want to know why I'm on disability? Let's go back in time. In
Dec. 2000 I finished a master's in occupational therapy. In June 2000 I had my first real mania. But it wasn't diagnosed. I wasn't diagnosed until I had been working almost 2 years. I was diagnosed by a dr. considered one of the leading experts in bipolar in the world and at the time considering the severity of my symptoms he was surprised I was able to work and that I had been in the same job for that long.

I fought tooth and nail to work. I LOVED working. It was how I defined myself. I wanted nothing more than to keep working for as many years as possible. But it turned out that I was unable to tolerate most APs and I desperately needed an AP. I had several short-term disability periods over several years and finally after some very bad reactions wound up tolerating Seroquel when we took months to increase the dose. But even then I had to have a ton of it plus a ton of Depakote so I remained very heavily sedated and kept job where I had flextime so I didn't have to work early. Some days I couldn't work and I worked on the weekends then. I did everything in my power to keep working. First one job fired me (their reasons were bogus but they could have fired me for other things so they kind of were right although had they not known I was bipolar the other things wouldn't have mattered like they didn't for other people) and then the next (that company has a reputation for firing experienced therapists and replacing them with new grads which is what happened to me).

During this time I tried vocational rehab in 2007. They recommended I go on disbility, they couldn't help me. I refused that and kept working. My psychiatrist told me repeatedly that for the severity of my bipolar I was the highest functioning patient she had ever treated. She and my therapist supported my desire to work as long as I could.

But I bounced back and into a great job. For a year and a half I was a contract therapist, working 12 weeks at a time in different places (I stayed in one place for quite a while and then did 2 contracts in another before accepting permanent role). In that job I thrived. My meds finally were balanced with the addition of an MAOI, I didn't need so much sleep, I was excellent at my work without a lot of extra effort and it was amazing.

Then in April 2011 Medicare changed a guideline that meant that my job was about twice as difficult. Other people resigned because suddenly paperwork at up your evening as well as what you did all day. I battled to get faster and keep up but nobody could. I was still doing my job and doing it well but I was getting tired and was having gyn. issues. I went off work in August to have surgery and had a bad reaction to a drug given under anesthesia. It caused akathesia so severely I was hospitalized and also messed up my cognition. We adjusted meds and adjusted meds and nothing helped. I was cycling a lot, not responding to meds, and I couldn't remember anything, act normal, anything.

I tried to go back to work. I went back for 3 days and then my managers and I together decided I wasn't ready. So I stayed off longer. They kept my job open much longer than was required and kept my disability going as well. But I knew in my heart that I was done, that with the cognitive changes and extremely unstable mood responding to nothing, including drastic treatment measures, I couldn't go back.

So I became suicidal. And I almost did it. I had the pills all ready and they would have done it. But at the last moment I got into the hospital and then when they didn't realize that I was so suicidal I managed to tell them before they sent me home and so I got help. And I started being able to say "I can't do this anymore".

I spent the next year or longer suicidal and fighting to come to terms with the fact I couldn't work. I hoped that I would be able to go back at least a little but so far I've not ever been stable so I haven't had that chance. Despite being on huge doses of meds (see my signature if you don't believe me) and having tried a ton of meds I don't sleep much and rarely fall asleep before 3 AM. Since I used to get up at 4 AM for work there is a problem there. And I can't handle stress. Add stress and I become suicidal. And then add in a year-long episode that has had severe attached to mania, mixed and depressive episodes and no normal time and at this point it's a great day when I can prepare a meal for myself.

Right now there is no job that I could handle. I have considered many. My OT license is going to expire soon and I have to decide in the next few months if I'm going to let it or if I'm going to get my continuing ed to keep it just a little longer, in case.

My whole identity and life were about being an OT. I still GRIEVE for that loss. I miss it with the depths of my soul. But it is not something I can do. I need help with things I used to teach people to do for themselves.

But you just go ahead and judge me. Because I'm sure the degree of sadness and loss I feel about having been forced to take this route doesn't come across nearly clearly enough for you.

I sincerely hope you never need support or have to accept that you can't work anymore no matter how hard you try. If you do, know that I am not judging you but do remember what you felt like when you wrote this because plenty of others will think it of you.

Originally Posted by RunnerIM

I'm happy you guys posted. I do not want to offend anyone. I would like to understand this better.
I am one of those people that judge people on disability. I feel bad because I do. When someone tells me that, then tells me their diagnosis (people tell me this voluntarily, I do not pry, I'm just easy to talk to) my first thought is "are you serious?" I immediately tell myself not to judge because I have no clue what they are going through, but I still do. I'm bi 1, OCD. My lows are LOW. I have hallucinations, hear things and bouts of psychosis. If I'm on the wrong meds or they aren't working right. I myself can not handle stress. Can not function in certain environments and can lose touch with reality. I still work. My bio dad is schizophrenic and can't hold a job well, but then works for temp jobs. He refuses to sit at home. He does not take meds, that I'm aware of. I really want to understand better. I know I have no clue of your guys support, home environment, etc so I have no right to call anyone lazy. And actually I never think people on disability are lazy, I just feel They are throwing in the towel and taking the easy way out.
I truly do not want to offend anyone I want to be more empathetic and understanding of this illness and how it can be so dibilitating to some.

[Permacultural]

Disability is an unfortunate necessity as well as an economic trap. The price of things at the stores are constantly going up (even if you're a coupon genius). Yet disability payments stay the same each month.

If you're on disability, You aren't allowed to get a job that pays much, to be able to pay simple bills that most people take for granted. And good paying jobs don't want to hire anyone part time AND provide them with benefits. Despite all the policies about discrimination, most part time jobs DO discriminate against people on disability. And then you get into the issue of-- nobody wants to hire someone without experience... But disability standards essentially prevent you from getting off disability. Cost of meds, required doctors visits, and God forbid emergencies, and you can't save money. It's living week to week, month to month.

So folks on disability end up without the ability to make their own health care decisions, and, God forbid we have a dental problem, disability only covers pulling teeth and a crappy bridge (if that).

What I think is that those folks that NEED disability are entitled to it... Recognizing the associated difficulties.. Better get it before baby factories start another disability career.

[HALLIEBETH87]

Originally Posted by lunaticfringe

Maybe I should just start saying I'm a freelance photographer since I like taking photos. I spend a lot of time thinking about what lies I could tell about my profession or whatever. The worst thing is that my in-laws are pretty judgmental/do not think bipolar is a real thing and that really bothers me. My partner loves and supports me 100% I just wish his family weren't jerks. Anxiety about my disability status makes me want to leave the house even less to avoid the small talk conversations that more often than not lead to questions about work. Like can't people think of anything better to talk about? I hate feeling so unaccomplished. I never thought I would be 26 and on disability. But...so it goes. My mental health is a lot better than it was a year ago when I was working.

Im loads better than when I was working! I tell people that right now I pet/babysit and they usually don't ask any more questions.

I think doing the work that it takes to get on SSDI is hard work. You should be proud that you were able to not only do all of that stressful work, but that your work made it possible for you to be on it. That's an accomplishment right there!

My dad had to go through two or three rounds of not getting approved and appealing to finally get it. I think people who judge you for it are unaware of how disabling mental health issues are. It's not a hand-out, its something you earned by working all the years before that. I don't know why our culture is so obsessed with what we do for work. I wish we were more family driven and asked each other, "How's your family/spouse/kids doing?"

[Bluesday]

I just signed up with a lawyer today to begin my battle for SSDI and when I'm approved I guarantee you I will NOT feel ashamed! I suffered through the traumas of working in hostile environments where I was always singled out for how my conditions effected my work performance. No more. No thanks!

[QUOTE=Cocosurviving;4814547]I just recently got approved. I've had people start to ask me questions like "how was your work day?" I just reply and say I've had a busy day. I recently met a guy and he asked for my number. The "where do you work?" will come up. I've had one family member tell me I'm wasting my degree sitting on disability??? But he gets SSI! I worked as a general social worker and mental health social worker. I thought to say "I'm a retired social worker" but I'm 39. I look real young more like 25 so saying retired people will look at me crazy. LOL

Anyone at a loss for an answer to 'where do you work?' now that they're receiving SSDI benefits may smoothly and confidently reply that they run an exclusive local distributorship for a guy named Lefty the Salesman. I'll vouch for you if necessary. If pressed for details, obfuscate. I can provide supporting disinformation upon request... until we're concurrently investigated by Social Security, the Hawaii Department of Taxation and the Internal Revenue Service.

Seriously, make up a cover story, like you're a CIA officer, and stick to it. Tell people you sell fossils on eBay. Tell people with a straight face that you're a sayanim, an embedded asset of the Mossad. Tell them you work from home as a B2B marketing consultant for the adult entertainment industry. Social Security does not have agents afield listening to what you tell people at parties. You presumably have a mental illness diagnosis... use it.

Peace keeping statement-----

None of us has the right to judge another. Some of us can work, some of us can not. Some of us are high functioning, some of us are not. Some of us are stable, some of us are not.

We are all at different levels in our recovery from bipolar.

[Tucson]

I was approved over twelve years ago. I have been seeing a psychiatrist ever since then. At first, I felt very very guilty about being on SSDI. My friends all hold down jobs, or are retired. The ones that I have explained this to felt that it was the medication that was making me this way. LOL They were not willing to accept that possibly my diagnosis was correct. So when they also found out that I have been on disability, their attitude toward me changed.

Nowadays, I still feel guilty. I am trying to assuage this guilt by planning for a new business opportunity. I have gone through allot of the formalities associated with starting a business. I now can say to others that this is what I do with my time. Doing this makes me feel less guilty. I really do not know if this is going to,work out, it is stress that I now have great difficulty managing. I do already have lots of stress at home.

So I understand the feeling of guilt associated with being on SSDI over what some would consider to be a "soft" disability, one with the mind. If I had something physical like back problems, I am sure I would of been treated differently. I still feel really guilty from time to time. I am also afraid of a medical review by SS, just to find out that they will think I do not have enough of a disability to remain on SSDI. This part scares me.

Tucson

[lunaticfringe]

I'll admit that I am quite low functioning right now. My partner manages my medication for me. I just got a dog and taking care of her and making dinner at night are pretty much the only things I can handle. I feel most comfortable at home. The outside world often overwhelms and scares me (when I'm not manic). I have had so many jobs I can't count, never lasting more than a few months. I always seemed to develop bad relations with my coworkers, and twice I lost my job due to being hospitalized. I have given up on having a 9-5. When I do work again it will be on my own terms.

[lunaticfringe]

Originally Posted by RunnerIM

I'm happy you guys posted. I do not want to offend anyone. I would like to understand this better.
I am one of those people that judge people on disability. I feel bad because I do. When someone tells me that, then tells me their diagnosis (people tell me this voluntarily, I do not pry, I'm just easy to talk to) my first thought is "are you serious?" I immediately tell myself not to judge because I have no clue what they are going through, but I still do. I'm bi 1, OCD. My lows are LOW. I have hallucinations, hear things and bouts of psychosis. If I'm on the wrong meds or they aren't working right. I myself can not handle stress. Can not function in certain environments and can lose touch with reality. I still work. My bio dad is schizophrenic and can't hold a job well, but then works for temp jobs. He refuses to sit at home. He does not take meds, that I'm aware of. I really want to understand better. I know I have no clue of your guys support, home environment, etc so I have no right to call anyone lazy. And actually I never think people on disability are lazy, I just feel They are throwing in the towel and taking the easy way out.
I truly do not want to offend anyone I want to be more empathetic and understanding of this illness and how it can be so dibilitating to some.

Honestly I don't know how or why you'd want to work if you're dealing with psychosis. Some of us just feel safer being at home and know that the added stress of a job exacerbates our mental health problems. My number one priority is my mental health right now. I do not want to end up in the same situation I was in this time last year, which was totally out of control and in and out of the hospital. I am trying to solidify my home life because being manic more often than depressed, I am notorious for taking off and doing reckless things with unsavory people. I am engaged now and if I do not do everything I can to maintain my mental health, then my marriage and home life will be in jeopardy. Neither of my parents are equipped to help me in any way and my fiance is all I have. But I won't waste any more time explaining myself because you've already made your judgments.