Deciding when to go on disability

[Kira]

Hi guys. I think I have posted specifically about this before, but wanted to bring it up again because I am having trouble coming to terms with it.

I have been considering going on disability for a while now, because I am missing more and more work & school and getting farther and farther behind with everything. I have already cut back on everything possible at work/school, changed careers, etc... and am still absent most of the time and just generally feeling like crap and always feeling guilty about the things I SHOULD be doing that I CAN'T do.

But, every time I bring it up with my Supervisor at work (who is a pretty good friend, too), she always says that we will just find a way to make it work and don't worry about it and so on. They are so nice about everything and have been really flexible with me. BUT I am still really struggling with stuff and just not doing a good job. I know it, and I know they know it and are just being nice to me. So, the question is, how much longer do I keep taking advantage of their kindness, and when do I suck it up and admit that I just can't do my job well anymore, due to my health?

My doctors all think I should go on disability, except for my shrink, who sometimes thinks I should go on disability and sometimes thinks that it's good for me to go to work so I don't go nuts sitting in my apartment day after day. My mom doesn't think I should, because I think she just can't deal with the idea of it. She just doesn't want to admit that things are as bad as they are.

I do have a disability insurance policy, so I would have that income. It takes several weeks for them to approve your claim, but I got financial aid this semester from school, so I do have a little bit of a "cushion" right now to use until the disability insurance kicks in. I do not know what I would do about medical insurance except pay for COBRA, which I can do for 36 months. Then I would have to convert it to an individual policy after that. I would also try to apply for the federal disability stuff, obviously, but I think it would have to be SSI, not SSDI, because I have not paid into Social Security hardly at all, since they don't take it out of your paychecks while you are a full-time student working for the University. I have probably paid less than a year, total, of Social Security. So it would be SSI, which means it would be Medicaid, not Medicare. And I know it can be hard to find doctors who take Medicaid, so I would want to have an individual policy and then use Medicaid as my secondary or something. I don't know. I do know that if I let my insurance lapse AT ALL, I will NEVER get covered again because of all of my health issues/pre-existing stuff. So I would pay into COBRA and then hopefully figure something out before my 36 months of eligibility is up. Hell, maybe the government will "fix" our healthcare system within the next 36 months (not counting on THAT, LOL).

Anyway, I am just fed up with my body and feeling so inadequate in terms of work & school. I wish I could somehow manage to suck it up and do what needs to be done, at least until I get caught up at work & school... but realistically, that will not happen.

So... I know I've asked this before, but how did you know it was time? Do you regret going on disability or do you think it was the right decision? What do you do about health insurance? And, for those of you who are still working, what would it take for you to quit? How do you get yourself to keep working? How do you deal with your health needs & work?

[debhun]

I am in the same boat with you on disability. I just yesterday file for it. I am going though a lawer. I too don't have all the creits. I was a stay home mom. But they are all grown up and gone.
You will know when it is time. Go by your body is telling you. Best of luck.

Deb

[GardeniaGirl]

Kira - I am fairly close to where you are although I think your symptoms are more debilitating than mine overall.

I am in a job with almost infinite flexibility - so its not easy to decide to quit.

Also, my current supervisor is a total flake, so the standards for what is expected of me have dropped tremendously- making it that much easier for me to skate by doing barely anything at work.

I know that sounds terrible, but its true.

I have a very strong work ethic, so I prefer to always do my best.

But we have a lunatic running our department now, so if I even do the bare minimum, it looks "amazing" compared to her.

Anyway, Maybe you could ask yourself, can you actually make it through a day at work? Or, how many days per week can you make it?

I would think that when you reach the point of just not being able to make it through a day despite all the accommodations, then you are ready to quit.

Or, if the cumulative effect of working through the whole week just pushes you into a very debilitated state at the end of the week, perhaps that is the sign too.

Its funny - my psychiatrist also likes to push me to keep working, for the mental stimulation it gives me. And, my dad also resists the idea of me quitting work.

My rheumatologist wants me to keep working if I can for the mental stimulation, but he is ready to support my application for disability at any time.

So....like you....this decision ultimately rests with me.

And it is such a hard one to make.

I have been pushing that envelope off and on for the past few years....and if I had a stricter work schedule or more demanding job, I would have gone out a long time ago.

I hope you get some more replies from people who aren't working any more....

GG

[Mark N]

Kira, Based on reading between the lines you have decided to go on disability and I think you should. It is like being on the high dive knowing you need to dive in but you need to convince yourself when to jump. You know you are not going to improve so it isn't hang on at work until you are better. It may take a while for the disability checks to start up. I know in my case it was 6 months before it would start and it took the company 10 months to approve me. Since you seem to have things lined up this would be a good time to take the disability. You will find that you are spending so much time each day dealing with your disease that there is no other choice for you.

Please go ahead and take the step you know you need to take.

[Debbie71]

I, too, am trying to decide when the time has come for me to leave my job. I am out this week again because of back pain. (Discectomy with fusion of L5-S1 in 2004.) I also have fibromyalgia, HTN, degenerative disc disease, migraines...all at the age of 36. I actually work for a doctor as an office manager. I am missing more and more work here lately and don't want to risk getting fired before I apply for short term disability. I truly don't know how much more my body will go...

[Diandra]

Hi Kira,
I don't know where you work but, I am sure it is not just kindness that keeps you on. Obviously they know what is going on with you and are willing to keep you on, "warts and all". I think that speaks alot to the kind of person you are. Obviously they know you are trying your level best to keep going and they sound like they are wanting you to continue, so I don't think you are taking advantage of kindness. I think you have to say, I have had enough, I cannot go on any longer. Pushing yourself to the physical max every day is not good for your immune system or your mind and I agree with Mark, it does sound like you have reached that decision. I think it is very smart that you are looking for feedback.

Personally, I know it is hard. I was forced into disability by my company, it was not a choice. I always thought once I was feeling better I could go back part-time, only to find out, they don't allow you to go back part-time. It was full time or nothing and required a doc's letter saying you were fine and could return to full time work. None of my doctors are willing to write that letter because they don't think I should ever work full time. Now the biggest problem was the compensation issue. I got 68% of my salary but it never changes. That did not sound bad 11yrs ago but now, it is not so great;if it weren't for my husbands income, I would not be able to exist.

Before you make the decision to leave Kira, please do find out all the fine print. I was stupid and did not. My insurance has alot of clauses and I also have SSDI also.

I wish you the best in this decision, I know it difficult. My friend had great advice, he said, pretend someone is coming to you for advice on the issue, how would you advise them. Also, whenever I have a big decision to make, I sit down and make a pro's and con's list and it may sound silly but it is truly helpful. I'm sure many of your friends here would be happy to help with that pro's and con's list. I would be happy to help.

Take care, Diandra

[Gimpy]

I think if you are able to work at all, you should stay working. Once you start the disability train in motion, it seems awful hard to get your life back on track. What sticks out the most for me, is your insurance. Have you checked on the price of COBRA? It's outrageous. And even if you do this and get on Medicaide, the prescription coverage is not so good. Since you don't qualify for SSDI, you will get SSI. It pays nothing. AND, there is a formula for how much money you can make each month to suppliment that small pay and still qualify. Lets say that limit is $500 (this is just for explanation purposes). Your disability insurance pays you $478.00 per month. Then SSI would only kick in and cover $22.00. (If it were SSDI then you could collect both.) They balance it out and you will not get full payment from both. Does that make sense? If your personal disability coverage pays more than that amount, you won't qualify anyway. You have to be indigent to receive it.

I may be wrong about this, but please do your research before you make such a drastic decision. You may want to continue struggling along until you qualify for SSDI instead of the SSI.

I have been on SSDI for several years. Even though I am not getting better, I called today about the ticket to work program. I am married with 2 teenagers and I am bored to death. I have been home for about 5 years and I'm sick of it. I have to find something to do. It will probably be part time, but that's o.k. I am starting to get depressed with staying home and no money to do anything. If you have unlimited resources and can find things to do every day to keep from going stir crazy, then you probably don't qualify for disability anyway. It's a tough decision, I did not do it lightly. But I always knew I would never stay on it permanently. It's just not me. I have to have something to do outside of the house.

Get all your info and weigh your decision carefully. There is a huge mental toll to pay with this.

Gimpy

[Boxerlover]

It is a hard decision to make. I fought my husband on it as he wanted me to file much sooner than I did. I kept cutting back on my responsibilities. I think it was over a 2 year span. Then I stopped working for 6 months and then tried to go back. That's when I realized there was no way I was able to keep doing this.

I began to feel very guilty about not being able to do my job up to my abilities. It was getting to be an inconvenience to both my clients and co-workers. It wasn't fair to them when I wasn't able to do my job.

I'm sorry you have to make this decision and such a young age. For myself I take some comfort in knowing at least I had my dream job for 10 years, and for 2 years I had reached my career goal. Of course I had planned on doing it for longer than that but hey, I had 2 years.

Take Care
Melissa

[Kathi49]

Kira,

I pretty much agree with what Mark and Melissa said. But I can also see both sides. Ultimately, the decision rests with you. But if the docs are saying file for disability, I think I would heed their recommendations. And as Diandra said pushing yourself to the limits is NOT good. I know I did it as well as Mark and others. I can understand too the psych doc saying it is good to keep your mind active but there are other ways you can do that. And, I know, I OPTED out but I haven't gone nuts yet staying home....then again, I have a pension coming in and my husband still works. So, my scenario is different. I can say with all honesty "I" felt guilty when I was missing so much work and/or co-workers took up the slack. In the long run, I wasn't doing them or myself any favors. And, yep, they were all very accomodating, friendly and understood. It is just that in the end it was best just to go rather than to worry every day if I was going to make it or not. Again, I think it all rests with you and how you feel about it. I have seen plenty of people stick it out too. But honestly, it would also make me wonder...why?

But I tend to lean towards what Mark is saying...I think you know what you need to do...it is just a matter of taking that next step.

[cindybear]

It is so hard to prove now a days that you are disabled..This means to them any job in the market,,Selling tickets at a movie theater...(they said they had 6 thousand jobs in the state of Ohio that I could do and This person that puts those little numbers in new pants (????) inspecters ????? There were like 3 thousand jobs in Ohio,,It didn't matterr where in Ohio..Just that it was in Ohio..But that was faded fast with my great attorney with my docters reply with me not aloowed no stress and that these jobs must have no stress..,He he, that was shot right out the door..Anyway,,,What I'm getting at is I have never heard of this second job..But they care not what job you do, And if you are young,,It is even harder,,I started at 38,,And they gave me a very hard time..I had a degree in nursing,,So I had some supervisory work,,Which is another thing they gave me a hard time on...It took me 5 long hard years to get it,,,And if I didn't have my husband, I don't think I could have done it...And survive,,....I thought I would have some problems but My lawyers thought it would be pretty easy case...I had a inoperable brain aneurysm with it pulsating on my cranial nerves causing horrible headpain..and double vision..Plus had a stroke with a stent placement that caused me to have horrible short term memory loss (almost loss my life ) The surgery was not successful..Blood is still reaching the aneurysm with every heartbeat. Through all this they still denies me at the ALJ court..I ended up going to the federal court...My attorney knew we would win..And we did,,,But it just took so dang long...And if I wasn't married, I just do not know what I would have done..Plain and simple...And it is sad,,,It shouldn't be that way, And I hope it changes and soon...Good luck, Cindy

[Kira]

Thanks for all the feedback, guys. I think that when you guys say that I already know what I need to do, you are right. It is just a matter of when and how. I have fallen so far so fast and it is frightening.

[Gimpy]

Thanks for all the feedback, guys. I think that when you guys say that I already know what I need to do, you are right. It is just a matter of when and how. I have fallen so far so fast and it is frightening.

Please seek advice as the difference forms a disability and what you will be getting. Make sure that it pays enough for you to afford the Cobra and your other basic needs like rent and food.

Hang in there!

Gimpy

[Kira]

Gimpy,

I have disability insurance that is pretty good. I have used it before for short-term disability (twice... about 3 mos each time) and they were decent. I have had the policy since 2001 and the pool is everyone that started med school at 5 different med schools when I did. It has an "own occupation rider" that is based on the assumption that we will be able to become physicians. It is reasonably cheap and as long as I pay my premiums on time, it cannot change until I am 65. I have already met my 180-day waiting period for this condition.

I would get $2000/month from my insurance policy. My rent is $535 and COBRA is $470 per month this year to keep the same coverage I have now. I have another substantial bill that is $486/month but that may change if my income changes (it is complicated). Then there is the other stuff, like utilities, food, meds, gas, etc. I would likely end up moving after my lease is up in August, because of increasing difficulty with ADLs, especially in this building (lots of stairs, laundry in the basement, no way in that doesn't have stairs) and so on. This is actually more than I make at my current job, but I am in school and my job does pay for health insurance and tuition. Also, my federal student loans go away in the event of total and permanent disability... that is quite a bit of money for my med school loans.

I am not sure if there is some way I would be able to get SSDI because I have been in school pretty much full-time (except for a semester of medical leave, and I am half-time this semester) ever since high school. I know there is something in there about being able to use parents' SSDI in some situations, but I may be too old (28). It would probably be either SSI or nothing, with maybe Medicaid but probably not Medicare. My insurance gives me the opportunity to convert to an individual policy when COBRA runs out, but I do not know the specifics of this. I would get a disability lawyer if I do this.

Several of my doctors have recently expressed that they think it is time to stop working... my PCP, metabolic/genetics doc, PM&R/pain doc, gastroenterologist, PT, genetic counselor, therapist, etc... But my psychiatrist doesn't really want me to do it until I feel ready because of the mental ramifications & stuff. This has all happened relatively quickly and I have a lot of work to do in terms of acceptance.

My body has really fallen apart, and my disease is progressive and affects multiple organ systems. I know five young women (roughly my age) who have this disease. Of them, one died last spring from multi-organ failure, two are on hospice care at home, and the other two are frequently hospitalized and have a lot of complications. None of them are able to work or go to school. I do have daily pain, often severe, but that is not my primary reason for needing to do this. The most disabling aspects of my disease are severe exhaustion (sleeping 14-20 hrs/day most days), vomiting all the time, and the combination of lots of hospitalizations (20+ in the past 2.5 years) and lots of time spent pretty much incapacitated at home but without anything they could do to help in the hospital. It is currently affecting function of multiple organ systems: neuro, muscles, kidneys, acid/base & electrolyte status, heart, autonomic nervous system, GI motility, etc. It is not really an issue of whether or not I am sick enough to be disabled... I pretty clearly am... it is more an issue of whether I am ready to swallow my pride or not.

Hope that makes sense. Thanks for your opinion, though... believe me, one of the things I worry about a lot is what my quality of life will be like if I have nothing to do day after day. I also worry that I won't do things right and will end up in a big financial mess. So I think your warnings are appropriate; it's just that I think it is getting to be time to do this regardless of the stuff I'm afraid of.

[BrokenBladder]

Kira,

Making the final decision to go on disability is a tough choice. First it makes you feel like a failure for not being able to work. Second you worry about money. Third you wonder what in the world you will do with all of that free time.

I personally found that once I filed and started receiving SSDI I slowly started not to worry as much about all of the things I listed above. I truly did my body a favor by giving myself the time to rest when I need to and now I don't feel guilty about not showing up at work. It was a big relief in many areas. I still want to work more than anything, but I'm able to live with the acceptance that I probably never will.

When the time is right you will know it in your heart. My advice is to not fight it.

[Gimpy]

I know you will do the right thing for you. It makes me sad to see someone so young being forced to make these decisions. Everything always works out and it will all work out for you too. I'm am sorry you are forced with these decisions. I too had to make that decision and it sucked big time. I got my SSDI decision in 21 days and it sent me into a tail spin of pretty serious depression, I wanted to wrap my car around a tree. It took me a long time to snap out of the funk of the "disabled" stigma I put myself in.

The only reason I wanted you to make sure how all the disability payments would turn out is because if you don't qualify for SSDI, I believe you won't qualify for SSI if you are receiving $2,000 a month from your private disability insurance. That means you will not qualify for medicaid. You will always have to provide your own insurance as long as you are not indigent.

I will be thinking of you and I'm sorry that you are forced into thinking of this so young, let alone at all.

(((Hugs)))

Gimpy

[debhun]

My DH just lost his job and COBRA was going to ne 1500. a month. As you see we didn't get it.


Deb

[Peter B]

Kira,
Hi honey. Hope you're feeling well today.
First off; I hope you realize that the company you work for, more specific, your immediate boss, is truly a rarity as far as how much they are willing to accommodate you. In fact its pretty amazing. You are truly lucky in that respect.
Correct me if I'm mistaken but, you probably would have applied already had it not been for your bosses' wonderful attitude.

I must agree with some of your friends here in that, you already know that you're going to apply. Putting thoughts down on paper solidifies your feelings. It works that way for me, anyway.

Whichever road you decide to travel down, I wish you all the best. I'm sure I speak for all when I hope nothing but smooth sailing.

Pain free days,
Pete

[Sunshine2]

I have been fighting to get social security now for at least 7 years, getting ready for my fourth hearing...kicked back down from Federal Court now for the 2nd time.

I am hoping to get social security one day, hoping to not end up on the streets....

My last hearing, they decided I should do secretarial work, I havn't done that type of work now for 20 years, it would be waaaaaaay too stressful for me....and sitting in a chair all day like that, would further make my back problems worse, not better....that is why I went on to do other things and that further damaged my back, so I just can't win, it seems. My last employer even demoted me and cut my hours, and then brought me back later and dumped more physical work on me...I finally ended up crashing and burning, was even issued a cane to walk at that point.....etc.

yeah, if they decide you can do button counting and there are no button counting jobs in your state, I guess you are supposed to pick up and move to try to get that job? I don't know.

But anybody who says I just need to go get a job, doesn't have my body. They obviously don't have chronic back problems or diseases, either.

[cindybear]

I'd imagine, after you'd win,,SSI, would probably be if you are lucky 500.00 a month..That would or might be hard to live on...You might want check to see if and how much SSi they are willing to give 1 person monthly,,,Money wise, I know they will give food stamps, medicade..But I know some people that hasn;t worked that barely get 250 a month,,Might want to check that out,,,Or do you have a suportive family that you can live with the rest of your life,,,Hugs, Cindy

[cindybear]

I just read the SSI website, The most a single person can get is 623 a month..And that depends on what state you live in,,it can be lower depending on your state and other things,,,But you can get food stamps and medicaid...and a couple can get as high as 923..

[Gimpy]

Thanks Cindi! That's what I was trying to tell Kira. It will be awful hard to live on that. If there is anyway to continue working until she can meeti the SSDI requirements, she would be far better off.

But, on the other hand, if she can no longer work, she can't work. That can't be changed. We certainly can't judge or tell her what she's feeling or what type of pains she has. I don't think any of us have a clue what her illness puts her through. (I'm not saying you were trying to do that, I just don't want others to think we were.) And most of us didn't have to make that decision at such a young age. I just want her to do all her research ahead of time so that she fully understands what she's getting her self into and if she can live with it. I feel so sorry for her being in this situation and to have her amazing career goals sidelined.

Hang in there Kira!

G

[cindybear]

Yes. That's allI want her to realize. After her insurance is gone and I think she is to old for her parents..Should have done that right away...before 21..I That is could be really hard to live alone with just SSI, and then if anyone gives you money or you work a little they take it away from your check..You can not get a head for a second with SSI, you will be in poverty for the rest of your life...Unless you can rent a room off your parents etc...Then it could be bearable,,,Is all I'm trying to point out...Then the boredom ,,of being,,home and alone...with nothing to or to go, no monies to do anything with...Good luck..Cindy

[BrokenBladder]

Kira could you clear something up for me? I thought I read that you can get LTD not STD so that should last at least 20 years. Please double check this before you make a decision. Most people with LTD receive it for many years and alot of times it's more than SSDI would ever pay you.

[Kira]

Yes, my disability insurance policy is for both LTD and STD. The benefits are guaranteed until age 65. I have excellent disability insurance, and feel very lucky to have it.

So I would not only have SSI... and actually, probably wouldn't even get $$ for SSI. I am just not sure how it would work out with being able to get Medicaid, etc. But my disability insurance is good stuff (which is not through work; it was through my medical school with the option to continue it after graduation).

I am not sure how all of this would work out and I would want to get it all figured out before actually quitting my job. It is just that I think it is coming soon whether I like it or not. I have too much trouble getting to work on a consistent basis.

And, like I said, it is more than just my pain that is driving me to have to consider this. If it was "just" my pain but I was still somehow able to get up & get to work most days, I would not be considering this. But pain is just one of the consequences of the disease I have. What is causing the most trouble with my ability to work is a combination of severe exhaustion, frequent & severe vomiting, and frequent exacerbations requiring either hospitalization or at least pretty much total rest on the couch. A lot of my body doesn't work these days, because my disease is gradually causing the cells in multiple organs to stop working &/or die. This is a progressive thing and will continue to get worse over time unless some scientist somewhere comes up with a cure for mitochondrial disease.

[Gimpy]

Kira: Make really good friends with your fellow "doctors", maybe your disease will intrique them and make it their life cause to find you a cure. I'll pray for that anyway.

Gimpy

[krashleen]

I just read the SSI website, The most a single person can get is 623 a month..And that depends on what state you live in,,it can be lower depending on your state and other things,,,But you can get food stamps and medicaid...and a couple can get as high as 923..
Thats SSI not SSDI...I get more than twice that amount on SSDI.

I say go for it, but plan on the worst case scenario...that you could wait a long time.
BUT, get your ducks in a row, residual functioning capacity form filled out by your doctors, and that your medical records are all in order. When you complete your Daily living be honest but don't 'sugar coat' it...that its difficult to do a, b, and c.
Things they need to know, like you can do this, but have to rest between even the household chores.

[Smiling Angel]

I just wanted to put my quick 2 cents worth in here. I am a Disability Claims Adjudicator. You can earn money each month, as long as it's under $880 a month, so a part-time job would not be a problem.

It's a tough decision. Disability is determined by many different factors. If you meet a Medical Listing, then you're in. The Medical Listings are on the SSA website. However, if you don't, then there's a whole formula we go through to make a determination, and, once all the reports are in, there is actually a chart we have to go by. In this chart, age is a very big factor - the younger you are, the harder it is to be qualified for disability. You would have to be rated 'less than sedentary' for your Physical rating, which means that you CANNOT even stand 2 hours a day at a job. The SEDENTARY rating is sit 6 hours, stand 2 hours, and lift and carry 10 pounds occasionally and/or frequently. This review is done by a medical doctor. Then we, as adjudicators, take this info and refer to the 'grid rules', as we call them. The grids are broken down into age groups - 55+ is advanced age (yikes, that's me!), then comes 50-54, approaching advanced age, then the younger group, the toughest, which is ages 18-49. I hope I didn't make this too confusing!

Good luck, whatever you decide!

[Mark N]

Kira, my LTD guarantees 2/3 of my income so whatever I collect they write me a monthly check to bring my income up to that 2/3 level. By the time I add in my SSDI, my teacher's disability retirement, and other money the LTD will pay only a few dollars each month until I am 65. I am not sure that is the way your's will work but that is common for LTD.

[anthoney]

I worked at least a years longer then I should have asking myself the same question. I was so lucky because the branch closed shorty after I did.

[Joyce E]

This is tough. I have worked at the same small business for almost 21 years. When one of the owners of the company came to me and asked if I had ever considered disability I told him yes but I was afraid they would be so angry with me. He told me I had given them more than 100% on anything I had ever been asked to do and I had earned using our long term disability. Needless to say I cried and hugged him and said thank you. Then he offered me the chance to not miss a paycheck in the 3 months til it kicked in and I cried some more.

Everyone says all anyone has to do is watch me walk and the doctors say anyone has to do is look at my x-rays and mri's and they should approve me. I doubt it will be that easy but I am going to go for it and pray all comes out good. I have a good friend LCSW who had gone thru this process with her clients and has offered to help me with whatever I need. My psych counselor has been urging me to quit for over a year. When I mentioned to my PCP and pain doc they were totally supportive of my doing it. If one key person had opposed it I doubt I would have done it, but with everyone so totally on my side I have to try.

Good luck to us all. I know it's tough and I'll probably get turned down by SS at least once and be so mad I could just spit. But I think on my 2nd try it will go thru just fine.