"Self-Identifying" - how and when?

Matthew74

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I know this has been rehashed about a thousand times, but I want to hear what you think. My experience with telling people I have epilepsy is EXTREMELY POOR. I really want to emphasize this, because I know lots of people can work it out, but that's not my experience. My thinking on this is that I'm just not the kind of person who can get away with it.

So, basically I'm not working. My rental assistance ends this month, with no possible renewal. My rent alone is more than my total disability payment (almost twice). I called a school where I studied IT stuff for job placement assistance. I talked to them about getting leads. I feel like it will be ok to tell one of the administrators there, but I don't know how to go about it. Mostly I'm looking for a job, but I am considering possibly taking some classes (which would be paid for).

I don't need "accommodations". I need flexibility that isn't possible in most work situations. Working 40 hours is near impossible. I can do it if I have to, but I have no energy left for anything else, and it makes me feel like I'm wasting my life. I worked full time for two years before Covid, and I can honestly say they were some of the emptiest years of my life. The work situation was ok, but work didn't mean anything. It was just stuff to do. I don't have a family, or anything else, to make something like that worth it. I can't pursue other things I like on the weekend and nights because I'm exhausted.

I've tried extremely hard to prepare for other jobs that would be good for me, but it's not easy with epilepsy. The jobs I would fit in best with hardly exist anymore. The problem isn't identifying what I could do, it's finding an available position - and being placed to take one if it did come up. I didn't get the help and support I needed when I was young, and now I'm getting old.

So, I earned an IT certification. Basically I really don't like computers very much, but out of all the things I've done, it's the only thing that makes sense right now. Honestly it's not a very good choice for me. That said, I absolutely have to be making better than $20 an hour, and I just don't see any other available option. I have to earn a living. Theoretically I could do something that I like better part time, but I have no idea how to get there - I've tried. I'm not 20 something and living on college loans anymore. I'm also stuck in Boca Raton. Boca is a place you retire to so that you can do nothing - not a place you start out.

I can tell the school exactly what sorts of things I'm looking for in a job, but I don't think I can communicate that in a way that they will understand.

Q:

How can I have a positive discussion about this with someone from the school? Obviously I don't have to say all that I just said. I need to communicate that I have different strengths and limitations. I need to communicate that being part of the "system" just won't work. I need something a little "different" and "low-key". I don't see the word like the tech crowd does. I DO think more like the particular guy at the school I have in mind.
 

Porkette

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Hi Matt,

I worked in a public school for 35 yrs. and I retired last yr. The best thing for you to do if you apply is to get a letter
from your Dr. stating that you can work in the school and I was open with administration from the beginning and put
it on my job application that I had epilepsy, that way they couldn't come back at me if I had a seizure at work. After I
applied I continued to call human resources and that way they knew I was interested in working at the school. When I
had my interview I explained all about my seizures and they accepted it. I worked as a Teacher Aide in Special Ed.
and many students had physical disabilities especially in neurology so we connected well.
I worked with students in high school and jr. high and I was very open to them and all the staff about my epilepsy
and they understood it with no problem.

Also if you don't want to work in the classroom they are always hiring in different dept. You need to go online and
check out the school you would like to work at and see their job openings. I know last yr. a lot of teachers and staff
retired all over the place.

I don't know how old you are but you could start your state retirement and you sure will get a good health ins.
policy and if you work for a certain amount of yrs, you can keep the policy and the price is a lot lower.
Give it a try and just to let you know I only worked 32 hrs. a week but I made sure I was in bed by 10 pm at the latest
and if my husband couldn't give me a ride I often got one from a co worker.

I wish you the best of luck and May God Bless You,

Sue
 

Matthew74

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Thanks, Sue. I'm not looking for a job at the school. I don't know how you did it.

It's a for-profit technical school. I'm wondering if they can help me find a job in the community that is suitable. Or, if they can help me find something temporary so that I can get some skills that will help with finding the job. Honestly though, I think it would be impossible to work and take classes at the same time.

I'm alone. I don't have anyone to drive me or anything.
 

Matthew74

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Ok, so I guess I thought about it. I don't have anything to loose. All I really need from them is some good job leads. It will be helpful if they can actually help me get a job, but I'm on their list. I might as well as go and talk to the guy. I'm sure he will be at least somewhat helpful. If it doesn't work out I'm none the worse for it. At least this way I can take advantage of one of the few resources I have.
 

XxBlaqkxX

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Jobs are difficult to find in the first place. I have had trouble with this for years. I remember starting out with a call center job. I last like 5 months the first time and the second time, I didn't get past training. It's too stressful for me and like you said, no energy to do anything when getting home. I couldn't stand that.

I suppose when it comes to discussions, just lay it out on the table. "I have epilepsy/a non-contagious chronic illness, I need a low-stress job." or, "What I need is a job that ______________."

I'm not sure what advice to give other than to be honest about what you're searching for. It is super difficult, of course, because like they say, "You don't get it 'til you get it." If you don't have seizures, you can't possibly understand the life of someone who does.

Have you thought about starting your own business? One that's a low-cost start up? Get a certificate in something that's in demand and then you can set your own rules and schedules?
 

Matthew74

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I remember starting out with a call center job. I last like 5 months the first time and the second time, I didn't get past training. It's too stressful for me and like you said, no energy to do anything when getting home. I couldn't stand that.
Exactly. I could get an IT "help desk" job, but it would be a nightmare. I didn't know that going in (long story).

Have you thought about starting your own business? One that's a low-cost start up? Get a certificate in something that's in demand and then you can set your own rules and schedules?
I don't think I'm capable of running my own business. I need more structure. I did try fixing clarinets and selling them. I went to school for Band Instrument Repair (in addition to all my other schooling), and I got a 4.0 GPA, but I had to quit half way through because I had to have back surgery. I tried unsuccessfully to get a job, but it was under poor circumstances. If I had any funds, or if I could drive, things might genuinely be different. There is a place "near" here, but it's much too far to bike. I went to all the music stores in the area.

There are things I'm good at, but they generally aren't "valued". People don't spend money on them. They do buy iPhones.
 

Matthew74

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Most people who do the things that I'm good at usually work for themselves. I don't know how to make it happen. You need resources and support.
For example, years ago I volunteered at this wooden boat shop for some days - mostly just to learn and I didn't have anything else to do. I hung around and got bored, they wouldn't give me much to do. I was highly motivated. They had highschool "apprentices" who got paid and were lazy (even for kids, I'm not exaggerating), but I was offering them free labor. Eventually they asked me to fit a piece, and I was doing a good job. It wasn't complicated, but you have to have to have to be good at that sort of thing. The guy, who had been more or less ignoring me, was stunned. "Have you done this before!?" But no one needs a wooden boat. You have to live in Maine and know some guy with a shop who happens to need help - OR do this huge apprentice thing while earning nothing and spending gobs of money for years on end, and then move all around the country so that you can get a job teaching other kids who want to learn. LOL The point is that you have to have the right opportunity, have to be able to take advantage of it, and need someone to take you on. It's just an example.

More seriously, I play recorder. It's a serious instrument for playing some kids of classical music, like Bach. I used to play Saxophone and Clarinet (and Flute), but I haven't played those in years. Recorder isn't exactly in demand, and you really need to have a degree in music to teach, etc. With my brain tumor and memory issues I really can't "learn" a piece the same way that most people do, so I can't really perform solo, and can't qualify that way. I KNOW I could teach, but there's no way I see from here to there.

I was a music major when I started college. The saxophone professor at a nearby university, wanted to give me "a substantial" scholarship to go, but the school wouldn't let me in on account of my math grades. I was clueless, but no one stepped in and explained to me that it was possible to work that out. I went to the "other" school, and it was ok, but didn't really work out.

I changed majors and taught myself recorder for fun. When I graduated I applied for a master's program in "Early Music" at a conservatory in Boston. I made a whole trip to Boston to do it. It would have been a good school for me. I wasn't accepted, which was not surprising, seeing as how I ever finished my music degree, and had never had a recorder lesson. They still took me seriously, even though I was basically playing on a "toy" recorder. I'm embarrassed now, but I didn't know any better then. The recorder professor seemed to like me ok though, and encouraged me. She even sold me a recorder cheap, so I would have a decent one. Later I took one lesson at the conservatory in Baltimore, and she liked my playing. It wasn't a practical to commute from Alexandria, VA to Baltimore, MD for lessons. It was impossible for me to even practice while working. I quit playing.

I learned gold leaf restoration (fixing antique picture frames). Not exactly in demand. I got a first job and even second job doing that, but then they decided to start stripping paint in the shop and I had to quit. I could have sued them, or got them in trouble with OSHA, but what's the point?

Sometime in there I called up the restoration department at an art gallery in Baltimore to talk with them. One of the restorers met with me and gave me a tour an everything. It was great. Nothing came of it. They suggested having me as an intern, and I followed up, but that wasn't to be. You had to go to all this schooling for art restoration, etc. I needed to earn money, but it was really cool.

I have a graduate degree in Theology, and 6+ years of college besides, with lots of philosophy. No college would ever hire me. I applied at a rural community college to teach an undergraduate ethics class. I was absolutely qualified and capable. They wouldn't hire me because I didn't have enough graduate credits in "Philosophy". The required credits could have been anything, they didn't have to be ethics courses. The problem wasn't my preparation, it was just a "requirement". Thats ok, because the way things are now, I wouldn't be tolerated anywhere in academia.

I have years of experience with house painting and handyman stuff. I'm good at it. When I was doing that in DC (an awesome guy used to pick me up) I would be working in these fancy houses, and realized that I had more education that the people we were working for. Obviously that's not what matters. I worked for this guy one summer in Minnesota when I was there. I painted his whole garage and all these old windows, and he was happy with my work. It was one of those things that just happened to work out. I walked to work and it got me through the summer. I can't do that stuff anymore with my back.

I tried to get a job at this start-up private school near my home. I was tailor made for the job. It was exactly what I studied in school. Instead the guy hired a few ivy-league grads who didn't know anything about it, and then they went bankrupt halfway through the year. Ugh. At least I didn't get mixed up in that.

I tried substitute teaching at the local schools in Alexandra. I found out I was NOT cut out for that.

It sounds like I'm just complaining, but it's extremely frustrating. I knew that when I graduated from college that things were going to be difficult, but I didn't know what to do, and without a car and in deep debt, my options were limited. I did try.
 
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XxBlaqkxX

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Exactly. I could get an IT "help desk" job, but it would be a nightmare. I didn't know that going in (long story).



I don't think I'm capable of running my own business. I need more structure. I did try fixing clarinets and selling them. I went to school for Band Instrument Repair (in addition to all my other schooling), and I got a 4.0 GPA, but I had to quit half way through because I had to have back surgery. I tried unsuccessfully to get a job, but it was under poor circumstances. If I had any funds, or if I could drive, things might genuinely be different. There is a place "near" here, but it's much too far to bike. I went to all the music stores in the area.

There are things I'm good at, but they generally aren't "valued". People don't spend money on them. They do buy iPhones.
Desk jobs seem to be what's often recommended by those with epilepsy, but they're not necessarily the healthiest or in the best work environments.

Running a business is often a lot of work, especially on your own. I think the trade off of setting my own schedule is worth it, but there's always risk to it whether financial, medical, etc. generally the start up cost is the hardest part, we generally have to wait until we get our tax return because otherwise, we don't have that type of money so that's a challenge, too.

I hear you with being good at something, but having it not valued.

It's awesome that you can repair band instruments! That service I can see doing well in some areas not others. Here, it would do well if it could be offered to local schools - perhaps with some type of promotion or something.

We do live in a rough day and age. :( I hope you find something that works for you.
 
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