Do you feel like there is a place for you?

Matthew74

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The older I get the more I deal with this...

I feel like there just is no place for me to be and belong. I'm not depressed, or being mopey. It's a real problem I have to deal with. Mostly I'm talking about working, since I don't have a family of my own.

I keep facing the reality that that the jobs I'm poorly suited for are the only one's available. I can't seem to get a real job doing anything I 'm good at. (I've tried A LOT of things.)

A great example is musical instrument repair. I'm good at it. I finished half a training program with a 4.0 and had to quit on account of back surgery. I tried to go back and finish, and got EXTREMELY close, but I couldn't. So on, and so forth. I tried selling instruments on the internet. Never got a job. There were several times where if someone had just given me a chance it might have worked out. I got close to getting hired. Things like this keep happening, and it's not my fault. I'm not perfect, but I've actually done well, all things considered.

Another example. I just worked two years at a tech company . It wasn't my "thing", but I made it work. My supervisor refused to train me. She did train the person they hired after me. Etc, etc. It ended up that, even though I had seniority, I was laid off. Basically it was wrong. I was intentionally prevented from performing certain duties. This was not my fault. I did a good job. I made a lot of improvements (my co-worker did not). Nevertheless, I was laid off. For most people this would be an annoying blip, or maybe a problem, but with epilepsy it's a huge deal. I can't just get any old job.

So I feel like I just can't find a place to be. It's not any particular thing, it's that I can't make anything work. Making friends has gotten more difficult as I've gotten older and had to move around. I'm not married, etc. Now I'm getting old. IDK how I'm going to get a suitable job after COVID.

Does anyone feel like this?
 

Porkette

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Hi Matthew,
I understand where you are coming from I had many jobs working at stores and at Universities but nothing really worked out well
because they were temporary jobs, then I got a job as a teacher aide in a public school the pay wasn't the best but the benefits made
up for it and I found out that I could connect with many students that had neurology problems along with teaching students and
their parents about epilepsy. I've been there for 34 yrs. now and my first students are 50-51 yrs. old.
Take my word I found that I had to stand up for my rights because often some of the staff and administrators would put up
a fuss about me having seizures but I spoke up to them and told them "If you don't like it there's the door" and I also reminded
them how there were students in the school who had epilepsy so if they were putting me down they were putting the students down.
Since you like to work on instruments you should look into getting a job at a public school or college to fix instruments or work in
the musical field they are always looking for help in that area. If you don't want to work full time just put your name in as a sub
and they will call you every now and then.
Just like you it's hard for me to get around and so one way I communicate it through ham radio I got my license a few yrs. back
and I can talk to people all over the world and I personally like the radio better than cell phones because I can make phone calls,
take hd pictures, and use the internet through the radio and it doesn't cost me a cent. You may want to look into that if you like
to make friends from all over the world. I wish you only the best of luck and May God Bless You!

Sue
 

Matthew74

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Thanks Sue.

I should say that my last employer didn't know about my epilepsy. I'm sure they realized I was a little different, but no more different than the software developers were!
 

Porkette

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Hi Matthew,
Each time I applied for a job I let the employer know I had epilepsy that way if I was hired and a staff member gave me a hard time
or if the employer gave me a hard time about my seizures I could point out to them that they hired me knowing I had seizures and
by doing that they didn't have a leg to stand on to dismiss me from my job do to the seizures. As a matter of fact 3 co workers
were dismissed from their job and another co worker had to transfer their job because they were putting me down about me seizures
but I turned them in and the local epilepsy support group had a lawyer at the school the next day which I had no idea was going
to happen and out the door they went. I wish you the best of luck and May God Bless You!

Sue
 

resaebiunne

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I've been down this path myself, except I moved around to find jobs, and took contract positions because I figured the extra money would help me pay down my debts. Turns out I was wrong. A contractor gets treated even worse than a full-time employee! So pathetic.

In the last 5 years I've worked at 4 companies now, and they're all pretty much the same vile institutions writing petitions and grants to bring in money for research and development of the latest and greatest missile or helicopter or aircraft or whatever. GE and Boeing are pretty fucked up because like the first company I worked for, many companies are hiring engineers straight out of college or university because they have no previous training (let's put it this way, they have no sense of ethics, so they are less likely to whistle-blow) and because college grads are cheaper to employ. I was making pretty good money as a contractor, and the people in charge knew it.

I think I'll try freelancing next. If I can find any willing clients to bite the bait first. I'm willing to do pro bono so long as you lend me the hardware I need to develop the software you expect.

Tangent aside though, have you considered SSDI? I don't know if you live in the US, but if you do, SSDI could provide you some basic income if you aren't already on it. I should be hearing back within a few weeks time if I got my SSDI approved or not. The back pay will mostly go to my mom who has paid my $700/month COBRA health insurance for almost a year now.

You gotta be assertive, and know how to get the right people's attention. Some people just don't care, others don't know how to help, and the remaining few will understand and listen and get you the help you need if you are respectful and polite. There's a fine line though. Sometimes you have speak up at people, but you have to understand that sometimes things are not always in their control either. So, it's a messed up game.
 

truegrit

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This is my biggest fear. I've been on disability for 15 years now. Disability can be a savior but it can also be a trap.
During the last 15 years, I've been able to pay my mortgage and other bills but have very few extras. This past November. I was elected
to our town council. The council pays nearly the same as a disability. $1400 a month. Social security considers this employment and will, therefore,
review me in September. Obviously this is not full-time permanent employment and comes with no benefits. If I lose disability I'll lose medical coverage. I've been out of the workforce so long now that it will be difficult to find employment as an auto diesel mechanic because things have changed soo much in that field. whatever job I end up with I'll likely start at a lower pay rate and after paying my own healthcare costs I may not be able to afford my mortgage.
 

Loopy Lou

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Wow, there's a thread i could have posted myself. I'm still unemployed after completing my bachelors 2 years ago now. In that time i've been volunteering at the local hospital and was caring for a family friend until she passed away in January (that wasn't paid though, she just needed someone to look after her). I used to be a carer for adults with learning disabilities, and while i loved that job, i was diagnosed with epilepsy not too far into it, and from then on the company did everything possible to get me to quit, which i eventually did after about 6 years. I'd never go for another job in care now, because i can't risk that happening again. It's getting to the stage where i'll have to consider moving town, and the thought terrifies me, i don't like change and i have friends here now. Like you, i'm getting older and it gets harder to make new friends. I mean, i was never really good at it even as a kid!

I hope we both come across something soon that works for each of us. I feel like a proper job and being needed will give me a sense of worth and usefulness. My last official job ended in 2012, and whilst i had stints of caring for family members (again unpaid), and went back to college and university in that time, i'd like to be able to do something with that now!

So.... yeah i don't have much in the way of practical advice apart from "just keep going". Just wanted to let you know you're not alone :)
 

Music36

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I’ve been on disability for 1 1/2 years. I haven’t worked in 9 1/2 years and I would really like to go back to working. But, it won’t be easy. I have a Master’s degree, but I never used it. I want to use it now. I figured the best way would be to start volunteering, but Covid-19 got in the way. So, now I’m just waiting.
 

Music36

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I’m also concerned about losing medical benefits if I don’t stay on disability, but I really want to work.
 

valeriedl

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Before I had epilepsy, 13 years ago, I had a great job and made enough money to live on my own. I had great medical insurance and the copay on any med was pretty cheep. Now between Social Security I make less than $2000 a month and the insurance I have costs a ton and really isn't that great when it comes to paying for meds. I'd love to have someone who works for Social Security to get paid that much a month and see if they can make it work.
 

Sabbo

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I often feet that completing my Bachelors--with a double major--was a waste of time. I should have said "I'm done" after finishing my Associates i Accounting. My simple partials were never a big problem. I had a son shortly after finishing my Bachelors. The complex partials started about a year later, just as I was ready to enter the workforce
I had such scary & dangerous things happen to me that it wasn't worth it. Once, for example, I nearly fell onto the tracks at the train station. Thankfully, another commuter caught me. I haven't tried to work since. I applied for disability twice. They denied it both times, saying "epilepsy can be controlled with medications". When & if I apply again, I'll go through a lawyer.
 
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Topcat

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Sometimes I feel that way but since I have 7 cats that need me I have to stick around.
 

Music36

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I’ve lived with epilepsy all my life. I went through undergrad and grad school as a single mother and was having seizures all the time. It wasn’t until my forties that I developed new health problems in addition to the epilepsy. Memory problems from all the years of seizures also came about in my forties. I also went through brain surgery in my forties. I then became overwhelmed with so many health issues. I have autoimmune diseases and have chronic pain. I also have chronic back pain. In addition, epilepsy surgery made my anxiety disorder much worse and made me realize I have bipolar disorder because the epilepsy surgery made it a lot worse. A combination of all these things got me to go on disability. It took me a long time to reach acceptance and then learn how to manage all these health issues in a healthy way. For awhile, I was trying to manage pain with steroids, anti-inflammatory meds, and painkillers. I even got steroid injections in my spine. The pain was unbearable. I now manage my pain through a healthy diet and exercise which happens to effect overall health. No more steroids, painkillers, or anti-inflammatory meds. The healthy diet is also because I have IBS. Diet and exercise also has a great impact on mood.
 

C0urt

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13 years at this point. And that fear or losing health care not just for me,but for my son until he turns 18. And every thing I was qualified for I can't do anymore, it either takes a DL or a physical. Motorcycle mechanic, life guard, that sort of thing. I own a small bicycle shop but it is not enough to turn a profit. It mostly just helps those that need it. I am trying my best to pay everything thing off. I would like to reapply to see if I would be able to get a car
 

Topcat

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I probably had some seizures (pretty sure I did) before but ever since I had a closed head injury my memory is bad and my brain is basically scrambled. Last time I thought seriously about going back to work I woke up on the floor so that was that, I don't judge my "worth" by a job. People are more than a job. A lot of people have jobs whoopie , then they go home sit on their butts and watch TV so don't judge yourself by your job in my humble opinion.
 

Sabbo

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My family--especially both of my sons keep me happy. My mom tries to spend at least 1-2 days/week with me. Sometimes she takes me shopping, or we just go to the mall so I can get out of the house & see people other than my family members. I keep myself occupied with my hobbies: stamp and coin collecting, quilting, & puzzles--jigsaw and word (fill-in & word search).
During the regular school year, our masjid has classes for children. My husband & I volunteer during those classes. I have many friends that I see on those days, & all of them know about my epilepsy. Thanks to this pandemic I haven't seen any of them since March, & miss them greatly.
 

C0urt

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My family has told me I was a burden. I am leaving in soon.
 

CQ:)

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My family has told me I was a burden. I am leaving in soon.
Court
You should never feel like a burden
No one knows what we gos through. I’m a strong believer of Khama and like to see some people spend day or week in our shoes and deal with what we deal with

I never judge anyone because I don’t know what they’re going through 🤷‍♀️
 

C0urt

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I try to give people the benefit of the doubt because they may have their own issues to. But their are reasonable limits.
 
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