Can't face being on disability.

I have epilepsy, a benign brain tumor, a post surgical back, and presently am diagnosed with major depression and generalized anxiety. Historically, I think it's more like dysthemia.

The problem is that I can't support myself, and don't have anyone in my life to depend on. I've never made much so if I got on disability, it would be very little. I'm working with the department or rehab to get a career, but the reality is I may not be able to earn a living.

I can't accept what that implies. I have an upper middle class background, a master's degree, and am well traveled. Over the past year I've been living in the sort of places and in the conditions that I would be condemned to if I were on disability. I can't live like that. Neither can I face always being subject to the hassles, limitations, and oversight of government programs.

If I were married, or otherwise supported, it would be a pain but being on disability would be doable. Unfortunately, I see no reason to think that marriage is possible for me.

A big problem I have is that no one understands. I'm seeing my priest and a therapist regularly, but both are younger than I am and both have a career and family. It's hard for them because they haven't faced the same challenges. I have a few old friends, but even they are beginning to talk down to me. They mean well, but I don't have anyone to advise me in a way that gives me hope and support. I've worked so hard for so long and can't accept the way things are. I can accept being ill, I can't accept that the present circumstances are permanent.

I'm sorry you are struggling right now. I hope Vocational Rehab will be able to help. I know it's frightening thinking about the future with limited resources, I'm in the same spot with that. Does Voc Rehab have someone to guide you with the Social Security aspects?

I'm sorry you are having to go through this. Last year I finally went on disability which doesn't pay me enough to live on but im married and my husband is retired and even with that we barely make ends meet.

So I understand your not wanting to go on disability. I didn't really want to either but the stress of work proved to be too much.

I hop the vocational rehab works and gets you back in the workforce. And nothing is permanent about disability. You can always go back to work if you become able to later on.

Good luck to you.

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You might want to try doing two things simultaneously: apply for SSDI AND plan to work part-time after you get it. The combined income of both might give you a standard if living that is tolerable.

Thanks. I'm planning on working part time. I feel abandoned, and don't know what to do. It's difficult dealing with everything alone. I'm afraid of what will happen if I apply for disability at the same time as I'm receiving benefits from Rehabilitation. Those are the sort of problems you run into. It would be different if things didn't take forever, or if you had someone you could call. The further you get into this stuff, the more out of control you feel.

Do you live with your parents presently? If so, is that something you could continue?

I don't know what the public housing is like where you live. In the area where I live, either public housing (city funded or HUD funded) or some of the apartment complexes that offer units for 30% of your income are usually better quality housing than trying to find somewhere on the regular rental market.

You have to get to know the reputation of the public housing in your area. Where I live, some of the larger properties have lots of crime. I live in a small one. There is less crime in this small public housing property in a small town where I live now than there was in the neighborhood where I owned a house 10 years ago in a large city.

I agree that people not understanding is a problem. I lost a lot of friends after I wasn't able to work anymore and gradually became very poor and then went on disability.

Part of it was them not understanding, and part was economic disparity. I couldn't afford to meet for lunch or to socialize in the way I had before with them.

I think it's good that you are talking with your priest. The pastor at my church was very helpful to me during the time when I was first facing all these changes.

One thing we discussed is what gives people worth and how it isn't dependent on how much money they can earn or what kind of job they can or can't do.

If people start talking down to you, I think you either have to have a discussion with them about it if it's someone you really want to keep in your life, or you have to let them go.

There are therapists where I live who specialize in working with people who are facing life changes because of illness or for other reasons. (I have never been able to afford to see one, but it's worth looking into.)

The government oversight is disagreeable. I'll definitely give you that. Even though I understand the need for documenting that people are actually eligible for programs, from time to time I mourn my loss of privacy.

One thing I try to remind myself of is that Social Security has a very specific definition of "disabled". It has to do with your ability to work consistently at a job that pays enough for you to make some dollar amount (not sure exactly what that is.) If it's a low-paying job, that probably means 40 hours a week. If you had a high-paying job but could only work 15 hours a week, they might find you not disabled if you're making enough money.

I try not to let that word "disabled" mean anything else to me except what Soc. Sec. says about inability to earn enough money to support myself. It doesn't mean "handicapped" or that you can't have a life.

If you do get approved for Soc. Sec. disability based on your past earnings and that amount is less than the SSI amount for your state (currently $733 + any state extra $) then you would get SSI payments as well and you'd probably get Medicaid in addition to Medicare.

I won't say that being on disability is a fantastic lifestyle, but I have found it less bad than being sick and unable to work and broke and NOT being on disability. That was definitely worse.

Also, try to remember that things may change with time. Your health may improve. You may find work that you can do. The transition of applying for and starting to get disability is a stressful one, and lots of people find that they get sicker and more depressed for a while and then they start to improve.

When you say "upper middle class", I'm not sure if you're talking about education level or family money as well ("class" in the US seems to be a word that isn't well-defined.)

If your family has money and they are willing to help you get somewhere decent to live, that would be fantastic.

I agree that it's difficult to find people in your life who understand what being on disability means. There will be a few rare people who will accept you as you are. Other people on disability will be more likely to understand.

There are plenty of people here on the PC forums who also understand.

I am nearing my mid-50s now. I became unable to work in my late 30s. I still remember how awful that time was and difficult the adjustment period was.

You may have to ask around about public or subsidized or rent-controlled housing and to find out what is decent and safe. Sometimes you can also rent directly from a property owner. It can take time and some trial and error to find a place to live that you feel like you can tolerate. Bad housing is a terrible strain on both your physical and psychological health, so I think it's important to work to find a place where you feel okay. Or, if you don't feel okay, you know it's not because of the housing.

Rose, unfortunately, no. It's a long story but basically I'm on my own. I don't really have anywhere to go home to. I can't afford a place to live, and am staying rent free. I'm comfortable but it can't last forever. I have two part time jobs but it doesn't cover expenses.

I'm very disappointed how things have turned out. I feel like a failure, even though it's not all my fault, because of epilepsy. I did a lot of the right things and worked hard. Now I feel like things should have been different, and that a lot of people let me down. So, instead of my efforts bearing fruit, my future seems to look more and more limited.

Thank you Jo, you understand. I'm terrified of public housing. Some of the people I've had to live with and next to in the past year have been a major issue. With epilepsy, I've found I need a comfortable, quiet, stress free environment. It's a necessity. I know all those folks have reasons for being the way they are, some of it is their fault, and some isn't. It makes me angry though because I never did drugs, never got drunk, I finished high school and college, and tried to improve myself, even when doing so made me sick. I'm sorry they are messed up, but I don't want to deal with people keeping me up all night, stressing me out, intimidating me, and making me sick. I don't care if they don't have money, or are different than me, as long as I can have some peace and quiet.

It must be awful tough to have no one to turn to. I'm sorry to hear you are this unsupported. I agree with thorne that having the reliable income of SSDI can reduce a lot if stress.

My sig. other lives in a low income senior housing complex. It is privately owned, but has a HUD affiliation. Senior by their definition is age 62 and up. They do a strict background check, and it is one of the safest, most crime-free places I've ever been. It truly is a sanctuary for the vulnerable. Though it says "senior" on the sign in front, they take in a limited percentage of young persons on disability. They have some nice younger adults living here on that basis. It may be that other senior complexes do this also. It's the sort of thing you would never know, unless you asked. In my experience, senior complexes are much calmer and safer.

I raised upper middle class also. I'm lucky enough to have section 8. So my son is growing up in a lower middle class apartment complex. I pay the same amount as I would in public housing. After bills I have about 125 a week. This doesn't include car insurance or phone. I would say my son grows up in a lower middle class lifestyle. It's not bad if you get section 8.

My heart goes out to you. The "system" we have for mental health and disability is abysmal. I am fortunate to be supported by my spouse. Accepting being disabled has been tough. There are income thresholds for SSDI, that are based on household income. So you might not qualify if you are married.

That said, the economic consequences of these disabling conditions are horrible and particularly shocking if you are from a privileged background. I'd say the system is heartless.

I'm facing an insurance dispute that involves a violation of the federal mental health parity law. I have been discriminated against because I am disabled.

If this were diabetes, there'd be advertising with smiling people who need chronic care and equipment to measure blood sugar. And there'd be charity walks with balloons and tee shirts.

Hang in there.