Working Full Time

[Racer]

The people who work full time jobs, how do you manage?

I have had ten different jobs in the past ten years. The biggest problem has always been with taking sick days and making it to work on time. I really enjoy my current job, and I have really tried to explain my issues to my boss, and he knows I am getting treatment. I understand it is not acceptable regardless. The situation is stressed to the point I might get fired/replaced.

I have been threw vocational rehabilitation before, I have trouble with interviews, and I dont qualify for disability... so what am I supposed to do?

[Angela]

if you have insurance, try not to lose your job. that's my best thought for now at least. you seem young so the chances of you getting disability are slim from what i gather.

[ramakentesh]

It makes me realise that some are worse than others. I used to work full time without a huge amount of difficulty for the early days,. Now days its much harder.

[AussieOI]

Hi Racer,

I work full-time however it is in an office doing a desk job! Last year when my POTS was very bad I found it incredibly difficult to work-full time. I basically got a lot of taxis to and from work and once at work had to stay pretty much at my desk all day except for bathroom breaks. There was a point when I thought if this is going to go on as bad as this I need to ask about having a few months with leave without pay. I had already had two months off as well due to a liver/GB issue so it was hard. I had even thought of resigning on my worst days.

I had to cancel a business trip to HK last year as I was too ill to go. In Australia my company offers income protection so if you are too sick to work you can get 70% of your pay for as long as you are out of work. I am not sure how the whole insurance thing works in the US - it sounds quite tough there.

I am much improved so working full time is OK currently. Last year I did find it hard to get to work at 9am as I felt so off in the morning. My company is good and quite flexible so they said I could work from home or come in late each day.

I would say just explain things to your boss - if he doesnt get it then what can you do? I am not advocating it but maybe some downtime would help? Could your parents help support you? What is your line of work?

[ramakentesh]

I had to cancel a business trip to HK last year as I was too ill to go. In Australia my company offers income protection so if you are too sick to work you can get 70% of your pay for as long as you are out of work. I am not sure how the whole insurance thing works in the US - it sounds quite tough there.

So can i sign up and quit? LOL

[AussieOI]

Classic - yes you can come and work and we can be POTS pals !! The IT guys even offered to put a couch in the computer room so I could lie down there so my workplace is now POTSified !

[ramakentesh]

Wow. My work made snide comments about me lying down on the job...

[AussieOI]

That's really bad although I'm sure people might have teased me about that if I had used it but more in a silly way. Some people are pretty clueless

[Angela]

Classic - yes you can come and work and we can be POTS pals !! The IT guys even offered to put a couch in the computer room so I could lie down there so my workplace is now POTSified !

shoot I wish we had a couch!. I get in trouble if I am late. and I don't drive so it's not usually my fault unless I am having a really bad morning.

Wow. My work made snide comments about me lying down on the job...

Me too Rama. Some seem genuinly concerned, others I think they just don't like seeing someone sick or head down on the desk.

[badhbt]

Sorry you are going through this, I know how hard it is to work with the unpredictability of this condition. I think there are disability laws possibly in your state. My Neurologist wrote up a little paper about my condition and my possible needs. I think if you get something in writing they have to legally work with you. At least that is the case in Washington.

Take care

[megsmit6]

I work full time in the ER at night. I am on FMLA (Family Medical Leave Act) so that way in case I am in the hospital or if my vital signs are not cooperating that day I can call out of work and not be punished and my job will be held for me. You should look into it.

[SeattleRain]

I would suggest searching for a job that would allow you to telecommute. I work from home and know many people who do this. My Mom has a co-worker who comes into work about once a week (she works at a window company). Another one of her friends worked from home for years for a large national bank. A friend of mine got hired by a start-up company 3,000 miles away and never even met his boss (only had to do a phone interview). The jobs are out there, you just have to be motivated and determined to find one.

You said you didn't qualify for disability so I presume that would mean disability pay would have been enough for you. That said, there are quite a few outfits online that hire people to work from home that don't pay very much (at least minimum wage - or contract work that would equate to however long you work). For example, one company hires people to do customer support from home, answer calls about looking up gift card balances. A friend of mine has a side job scheduling hotel reservations from home. Another for online chat support -- stuff like that.

I would not suggest pushing the disability issue. Unless your bed ridden and incapable of working a desk job I think it's a dangerous road to go down. 10 years from now when you decide you want to work again or the money doesn't meet your cost of living, you're in for a huge challenge. If they ever had to reform disability programs to cut spending, you'd be the first to go. Then you have no means of income and have to find an employer that's willing to hire you after being out of the workforce for so long. It makes it nearly impossible to save for retirement.

Anyways, that's my two cents. I hope you get it figured out!

[ramakentesh]

id love to work from home. I could work so much more efficiently instead of spending half my time trying not to pass out half the day.

[AussieOI]

It certainly saved me last year. Even just one day a week helped massively. Rama can you ask to work from home or is it just not viable?

[bustersacc11]

Racer, trying to strike a balance with continuing to work while managing your symptoms is SO HARD! I applaud your efforts. I have been unable to work. It will be 5 years this July. I can only suggest read over the advice given from others on ways they have managed their workload. See what you can try out that might work for you. Whether it be a stay home job, if you qualify get FMLA, etc.

It is totally up to you, however; I do disagree with not pushing the disability issue. If you do not qualify for SS disability than I assume two things. You have not earned enough work credits over your work history or you have applied and been denied at all 4 levels (Federal Court). However, there is another disability program that is based upon need. You may want to look into that.

It might not be what you are making now but I don’t know anyone that would say disability pay is enough for me and meets my needs. It comes down to sometimes when you don’t have cash flow coming in because you are not well enough to work anything is better than nothing. You will find most people on disability whether it is physical, mental, emotional, developmental, etc want to work. Many are not bedridden. Reality is they approve people quicker that are incapacitated or bedridden because they know their life span is probably short and they won’t have to pay benefits to them for decades. But for those that need disability it can provide you a monthly check (not much, but something). Also, eligible for medical insurance (Medicare). It is something. If you have kids. They will get a monthly check up to the age of 18. Survivor benefit. Also, you can still work as long as your gross income is less than $1000/month.

Further, what life is going to be like for any of us down the road in so many ways is unpredictable. Related to work and this topic, there are programs out there to help people with disabilities transition back into the workforce. Especially, for individuals that have been away from the workplace for a while. Your skill sets never go away. Maybe a little rusty. Just have to find something to put those skill sets back to work. Work ethics are part of our genetic makeup. God willing I am able to work some day and that question came up why have you not worked for “x” amount of years. It will be a tough sell but it is totally doable. People make lifestyle and career changes all the time. Stay at home moms go back to work after years out of the workforce and hold important positions.

We are a unique group of people. We are survivors. We live each day just trying not to let those monster symptoms get the best of us. Maybe it would be worthwhile to revisit with a disability attorney your options if you are really having a tough time working due to your illness. For now. Things can change for the better down road and I hope that is the case for you.

[Racer]

Wow, thanks everyone for the advice!!!

I plan to do my best to try to keep the job. I only make minimum wage, but I do get health insurance, so I want to try my best to keep it. I live with my parents and they support me a bunch since I dont have much income. They wouldn't be to happy with me if I decided to go on disability.

If I end up having to get another job, my biggest hurdle is with the application and interview process. Do to my asperger syndrome and learning disabilities, I usually need help with filling out applications, and the anxiety and stress of a interview causes me to freeze up verbally. I have a aversion to phone conversations because of the same reason. This really limits job opportunities for me. Basically the businesses looking for unskilled "cheap labor" are the ones most likely to hire a person like myself. These type of places don't put up with employees being late and taking sick days, since they can easily replace you if needed.

I have been threw vocational rehabilitation three times in the past ten years, but dropped out because they were little help. They were only willing to find me bad factory jobs with poor working conditions for very poor pay. I tried to get financial assistance from them to go to college, but was told no based on my disabilities (there way of saying I am not smart enough).

I was unemployed for over two years before I started my current job. I really enjoy my job, and they are very accommodating, but realistically they are only able to accommodate so much. I am most symptomatic in the morning, and showing up late and taking to many sick days is the tipping point. I am relied on, and the company is suffering when I am not there. I have been giving them the idea that once I get proper treatment, things will get much better. It has been going on long enough now though that it is not seen as a temporary problem anymore.

If I lose my job, I am risking much more though. I don't have the greatest relationship with my parents, and they made it clear that if I lose my job, they will not accept, and dont have the finances to support me being unemployed long term again. I dont want to end up having no other option but to live in a group home.

Anyway, thanks everyone for the advice!

[Orthohypo]

Racer,

If I understand you correctly you tried to get help to go to college through your employer. You should go to a college Student Accessibilities office and see if they can get you funding to go to college or community college. They will also advocate for you while in college. I teach at a state university and we must make accommodations for those with special needs (students that is! I don't get to have that government mandated support!) I have had several students in my classes with disabilities, and one with Asberger's syndrome who was really quite intelligent (as most of you are). He will probably be able to graduate with a degree and obtain a good job with a decent salary. He is very good on computers and may be able to hold a job without having to do a lot of communicating with people outside of immediate co-workers. You could look into a career which allows you to have flex time or work from home as many web-design companies do. If your parents know you will be earning a degree, they may be willing to give you some time to get to that place with more support. Even if you do have to live in a group home, you could still be a student.

And for those of you looking into disability insurance, you might also check on a mortgage disability policy. I'm trying to go that route since it looks like things aren't improving for me and at least it would help pay for the house if I lose my job. My doctor has had several patients who have had no success getting by that independent doctor requirement for government disability even though they can't hold a full-time job due to dysautonomia. As I understand the mortgage disability, there is only the need to have your doctor document the issue (I hope that is right! Just got it today and have to plod through the fine print.)

[bustersacc11]

I looked into the mortgage disability insurance. It ended up being very close to the same process of applying for term or whole life insurance. From my experience they wanted me and my doctor to answer a medical assessment form. Since I was declined in two shakes of a lamb's tail for term insurance, I said why even bother. Once they hear dysautonomia and want records from all my docs at all the different medical centers. They want low risk and profit. Not high risk and have to pay out. I hope you get it. If you do hold onto it!

Also, Orthohypo that is a great point about independent doctors that work for the state reviewing medical cases for people wanting disability. Let me add something. State doctors are mostly reviewing your medical records to determine if you are able to perform any "gainful" employment. It is the "gainful" employment part that is very gray and tricky. I will use you as an example. They may say while you can't teach at a University level anymore, you can work as an educator in some sort of lesser capacity that would work around some of your issues. Hope that makes sesne. The State doctor's physical exam is not extensive, nor does it involve a bunch of testing. Rather it’s your personal doctor’s and hospital medical records, not opinion, that are important in getting approved. So, if your doctor does not support your disability claim, approval will be very difficult. Anyone out there needs to make sure your doctor is willing to support and assist you before you start the process. Most people get turned down because they don't understand the process. A good lawyer should be able to help with that piece. These lawyers all get paid the same. $6000 per case. So, if you are awarded disability they get paid $6000, which usually comes out of your back award. If denied, they get nothing.

[Racer]

Racer,

If I understand you correctly you tried to get help to go to college through your employer. You should go to a college Student Accessibilities office and see if they can get you funding to go to college or community college. They will also advocate for you while in college. I teach at a state university and we must make accommodations for those with special needs (students that is! I don't get to have that government mandated support!) I have had several students in my classes with disabilities, and one with Asberger's syndrome who was really quite intelligent (as most of you are). He will probably be able to graduate with a degree and obtain a good job with a decent salary. He is very good on computers and may be able to hold a job without having to do a lot of communicating with people outside of immediate co-workers. You could look into a career which allows you to have flex time or work from home as many web-design companies do. If your parents know you will be earning a degree, they may be willing to give you some time to get to that place with more support. Even if you do have to live in a group home, you could still be a student.

And for those of you looking into disability insurance, you might also check on a mortgage disability policy. I'm trying to go that route since it looks like things aren't improving for me and at least it would help pay for the house if I lose my job. My doctor has had several patients who have had no success getting by that independent doctor requirement for government disability even though they can't hold a full-time job due to dysautonomia. As I understand the mortgage disability, there is only the need to have your doctor document the issue (I hope that is right! Just got it today and have to plod through the fine print.)

Thanks! I will think about that all

[Orthohypo]

Bustersacc11,

My doc is supportive but she has tried for some of her other patients and at least in Ohio there are mostly denials for disability. She's had some patients trying for years to get it but once they send you to an independent doc, especially if serious tests like heart issues are non-existent, they deny it. I can apply for disability through my retirement system but again there is that third party evaluation required. Thanks for the info about the lawyers - good to know.

[NaomiSpellman]

Try finding something you CAN do. For example, I am totally fine writing/researching for hours as long as I am prone or sitting. You could specialize in some industry, as there are all kind of materials published for every industry (for their own employees, for trade shows, trade magazines and websites, for retails, for marketing/PR, etc). You could even get an online degree in a growing industry to increase your knowledge/vocabulary in that area. If only I had followed my own advice . . .

I asked for a reclining chair at work to prevent acute OI symptoms during work. I have been working as a teacher for many years, but my condition is worse now. It looks like my department wants a Functional Limitation Letter update in order to provide such a chair. I guess I will just use a regular chair/s for the time being and see what I can rig up in the classroom. My main fear is how students will respond to seeing their teacher reclining or sitting back with foot up during lecture! LOL all around! I suspect it will become a big joke. I am thinking of ways to explain to students why it is better for me to lay down than to have acute episodes at work. Maybe I can show a video of a circulating Lava Lamp (I would be the unplugged motionless Lava Lamp)? Any ideas?

I feel lucky that I was able to work for so many years without the sickness overtaking my life. I see that many here were much worse off than I was while young, and it pains me to imagine such an early disability. In my case I often had problems at work and was unable to advance in my work. While symptomatic it took too long for me to complete simple tasks. Occasional rude comments at work and few invites to social events. Every job ended too soon, without words spoken about the odd behaviors and limitations, as I did not have a diagnosis until very recently.

But I have to wonder - what if I had been properly diagnosed while young, and never went to work? It would have saved me from a lot of acute distress, but I would have never had the pleasure of taking big risks and failing, or dreaming big dreams. But in such a competitive environment shame and decreased self-esteem became a chronic problem - at least until I understood the medical underpinnings for these symptoms. Still working on that one.

Naomi

[Orthohypo]

But I have to wonder - what if I had been properly diagnosed while young, and never went to work? It would have saved me from a lot of acute distress, but I would have never had the pleasure of taking big risks and failing, or dreaming big dreams. But in such a competitive environment shame and decreased self-esteem became a chronic problem - at least until I understood the medical underpinnings for these symptoms. Still working on that one.

Naomi

Naomi, You make an excellent point. While I have had symptoms and related medical problems for my whole life, I didn't know what was causing it. All the doctors and procedures over the decades have been frustrating to be sure. But I've been a very active person even fighting through it all up until the last two years when I got knocked down big time.

As for the workplace, I would guess there is nothing that prevents us from getting a wheelchair and putting the leg supports up. It's not asking for sympathy or belittling those who can't walk and absolutely HAVE to be in one, but that alone might help others understand that this is a medical problem. The lists of things we are supposed to avoid include walking a lot, going up and down stairs, standing for long periods of time. As teachers, we are required to stand most of the day and move around the room. My office is on another floor, so that means stairs. So since all public buildings have to be ASA compliant, we would be able to have access with a wheelchair. I believe it only takes a letter from a doctor to get a parking permit. Although I would have a bit of a moral issue personally with taking a handicapped space since I can still walk, the only other thing to do would be to drop off the wheelchair. park and then walk to the door/chair. I am considering doing this because if it helps me to keep my job, then it's worthwhile!

[Racer]

But I have to wonder - what if I had been properly diagnosed while young, and never went to work? It would have saved me from a lot of acute distress, but I would have never had the pleasure of taking big risks and failing, or dreaming big dreams. But in such a competitive environment shame and decreased self-esteem became a chronic problem - at least until I understood the medical underpinnings for these symptoms. Still working on that one.

Naomi

I was diagnosed with disabilities at age 6. All threwout school I had at least some classes in special education, and this reminds you daily that you are different. Like most kids in these types of situations, I tried my best to fit in with the "normal" kids. The other kids are experts at finding weakness, so you try to brush everything under the carpet, and act as normal as possible.

So when I became a adult, I really felt the need to go the extra mile to prove myself and tried my best to hide any weakness. Of course I didnt know I had autonomic dysfunction, and I ignored the symptoms for many years. Even if a doctor did tell me I had this, I would have ignored it. It wasn't till I started fainting numerous times a day, couldn't get out of bed, and spent two weeks in the hospital, that I realized something was wrong enough that I couldn't ignore it anymore.

When I limit myself, I feel like "it" is winning, and I am weak because of that. Feeling weak sure is a blow to the self-esteem. To boost the self-esteem, I must push myself, but then I end up spending the next day unable to get out of bed. The brain sure is a funny thing, always tricking us.

[Anoj]

keeping my high-intensity, full-time job was one of the most difficult things i did post-POTS. i am now working part-time, in my field, and immensely happier. it's scary, though, because i don't have disability insurance anymore. my husband is doing his best to take care of us. i am now making a third of what i was before. honestly, we are doing OK money-wise! we save a lot by not eating out, and i cook lots, now that i am home more.

the discrimination and treatment i faced at my previous job was terrible. i've written about this on this board before, if you want to search. i chose to ask for a reasonable accommodation under ADA - working from home. they simply had to comply becs it is the law. i was treated horribly, though. my office was given to someone else, and i was pushed into a cubicle. i was taken out of leadership meetings. i was taken off of projects that reaped bonuses for others who took over my work. i was told not to discuss my illness with anyone. i was told not to complain to anyone if i felt sick. etc., etc. it was a terrible environment, and i am eternally grateful that i am not there anymore. before i left, i told the HR manager EVERYTHING in my exit interview. i was hoping they would fire the witch, but she is still there and continually climbing up the ladder.

it was very important to me to keep working and not have a gap on my resume. i was worried about qualifying for disability, based on others' struggles. i'm glad everything worked out the way it did for me (for now).

i have never hated anyone more than my previous boss. i still wish she would get what she deserves, but sadly people like her often are the ones who get ahead.

[AussieOI]

That is so dreadful Anoj. It is terrible to think there are people like thart out there. I am glad you are much happier now. To be honest it sounds like the best thing you did was to get out of there. Life is short to put up with that kind of treatment - it's great that you can still manage money wise and not have to work in that place anymore.