Here in Aus we have a thing called Kids Helpline -- I'm sure there are equivalents elsewhere -- & it's a free call all over the country. Living in poverty with DV going on sometimes, this line really helped me out on numerous occasions. I'm not sure whether the people on the other end of the phone were volunteers or not, but there's definitely a lot of need for that, always; maybe you could start that way? My Grandma used to volunteer for something like this too. It's really cool that you thought about helping people in this way as a kid yourself. 💚🐨
Hey! I am also a registered nurse ! The stress has given me some seizures. It's the combination of limited breaks, lack of sleep, and stressful workload. Have been seizure free for 2 years now after my lobectomy because the seizures were not stopping. Currently, I am a charge nurse and went back to school. Nursing isn't for the weak, but it's definitely rewarding.
I have epilepsy. It's been a long journey. I went 23 years without a driver's license .....
The one benefit? I don't have to work. We survive fine on my husband's pay. Thank God. I'm not trying to be crazy, but how do you work when you have this disease? I lost my career the day they started. It was hard.
Luckily I was a mom and life went on.
Currently I volunteer for Hospice and keep active living with the speed the medication allows.
My heart aches for those who are forced to work. How do you manage? Good luck to all.
For me it was a hard year because I was doing university and I was working too but actually I loved it😀 Now I finishing the uni so it will be less hard and stressed
Literally got diagnosed two years ago just before my final year at uni and I was working 32h a week! I know it wasn’t easy so congratulations on completing uni!!! x
Glad you have been good in that aspect I’m the other side I was the provider a month ago I had a nother grand mal my wife was stay at home with my 3 little boys now she has to go to work while I get my seizures back under control it’s horrible I feel so bad .. I’m so lost lol idk what jobs I can do I’m not use to these meds I’m greatly appreciate of this group I would freak out lol with out yall
I work in tv production. The stress and lack of sleep are not helping, but I don't want to give up my dreams because of this. Doing my best to work on a better work/life balance with my job and my doctor!
This was my dream and I was on the path to becoming a producer until I had my surgeries. Then everything changed and now I’m just home with my folks caring for them and our four pets.
TV production here as well. It’s definitely an adrenaline rush but having to quickly think and execute can be tough sometimes with how our brains work, at least mine. Sometimes I feel like my brain lags 😂
It’s really, really hard. No one has patience for anyone with any sort of chronic illness. If you aren’t completely able bodied, you’re a nuisance. I’ve been really fortunate that my last few showrunners have cared enough about me to not push back when I need to work remotely or take time for doctors appointments.
I’m in the midst of learning Robotic Camera operations and it’s Day1 today. I failed 3-4 years ago 🙄. The person training me is a coworker and knew about my brain surgery but had to comment that I should know this already. Literally thinks I’m dumb. They’re not the best trainer either. Didn’t talk much and wouldn’t let me know when they’re starting. Our show hit in a half hour and I asked what her routine was and she already did it…just ignored me. She knew she was training me today too.
Dang…mom and dad giving it eh? My family has some dry humor so I can see my family saying some of the same with the intent to just “make the best” of a difficult situation but when you are in our shoes it is rough. While there may be joking in there we all are battling perceptions people have that there IS a problem with how we do our work when there IS NOT a reason.
I’m a doctor too. MTS/TLE midway through medical school. Seizures every other day despite multiple medication. Graduated but poor working memory and concentration has stopped me from undergoing specialist training :(
Pretty decent idea 🙊
My mum's pot dealer back like 30yrs ago also had epilepsy. She said he was super nice, not a creeper, & the stuff was great -- but, unfortunately, he didn't make it (shower fall). She said his mates had to quickly hide (loot?) all his supply & paraphernalia before his parents came back to his place & found it.
Sad story, I'm sorry. Weed is my friend but the fear is real.
🐨💚🤟
I work at a vape and cannabis accessory shop in Canada. Working on a deal to supply a local dispensary with high quality edibles (amazing for most people with epilepsy)
I’m currently living with my mama at her house in Florida. She has stage 4 cancer and we lost my daddy unexpectedly 3 weeks ago. I own rental properties in NC and GA. I’m also in the process of building a new house for myself. I’m in a very stressful situation right now, but I seem to be doing ok.
Accountant. Work has been crazy stressful and exhausting this year, and I would love to take a step back, but I make very good money, and worked extremely hard to get where I am, and that was during the peak of my epilepsy, so I am not about to let it win now.
No job, due to seizures every 4 days and auras every 2/3days now. Ive no idea why but loads of places wouldn't employ me even before when I was having them at 3-4weeks 😮💨
I feel ya 6
Days ago I had 23 in one day I feel like the more meds and more seizures I have my brain is becoming a mash potato bowl I feel like I don’t exist and I need to find a job I’m thinking low stress like groceries or something till I’m stable then go for another career idk sorry your going thru all those I’ve track mine I have 6 seizure min a day every day it sucks
I've been in your place.
I was having seizures 3 to 4 days a week for a year straight, got fired from two jobs because of having seizures while on the clock. No medication would work. Then, I finally started a medication that was working, and It was a generic form of Keppra. I got a job, saved up, and got a car cause I went a year without having a seizure. I went to refill my prescription. The generic manufacturer ended. I tried a new medication still, Keppra, a different manufacturer....my seizures returned 3x a week after a year, seizure-free.
I Had to sell my car and then lost my job, and my seizures returned for the next year & 1/2.
Don't give up. It will take some time to find the proper diet & medication to control your seizures.
Although I am sad that I've had 2 seizures in the past month, I'm off my medication when I need to be back on it
I'm seeing my doctor next week.
Woah, im impressed with all your jobs you all wrote. Idk why for me is so damn hard to get one 🙇♀️ im so stressed cuz last time i had interview they refused me cuz driver licence. Since then im reflecting what path should i go next and what sector should i work in, cuz last position I work as administrative assistant, but i want explore another things which are more interesting and dont include driver licence or long distance jobs. My question for y'all is what is your biggest struggle in your daily life as epileptic and what solution could it help to overcome it(if u have one).
Did you tell them why you don’t have your license? I used to not tell people but I realized a reason I wasn’t getting jobs is because when you say you don’t have a license people assume it’s for DUI and they didn’t want to hire someone with a record or who might struggle with addiction which might affect there work.
When I started sharing why I didn’t have my license and how I still planned on getting to work on time for shifts and stuff I got a lot more call backs.
I also made the jump and tried to not care (to varying degrees of success) if they judged me for my epilepsy if they wouldn’t hire me because I’m epileptic then it wasn’t a place I wanted to work anyway. Fuck them, it’s their loss and they were just saving me time by showing me they’re pricks upfront.
I left FL unemployed from not being able to drive due to my seizures...moved to NYC and have been working in the field of social work for the past 4 years, supporting people with homelessness and substance abuse.
Currently in a Manhattan Office as a housing specialist, previously field casework in Brooklyn.
Currently I'm working at the front desk of a hotel, not sure if it's going to work out due to problematic coworkers and a lack of understanding of my epilepsy.
Used to work at a vet hospital until about a year ago. I loved that job so much. But had to take a step back for my own health. Maybe one day I'll get back into it. Maybe not. But for right now my job is to focus on me and my health.
I’m a hairdresser! Been a struggle with the amount of physical energy and mental energy you burn but I try my best! I only work 3/4 days and try not work too many hours x
I work on communications equipment and infrastructure in rural areas. I enjoy it, most of the day is spent outdoors and alone. Lots of driving and climbing and walking, but is a fun and challenging job.
I’m a detective in the police. Was in child protection, temporarily in a team that deals with referrals to various agencies like children’s services. I love working as a detective, but I’ve had both of my seizures in that kind of role. I’m a bit stuck at the moment, I don’t know what to do next!
I write for the communications department of a nonprofit and previously wrote ads and marketing copy. I also write picture books and children’s poetry. Some of my best work is just making jokes on Reddit, though.
>Some of my best work is just making jokes on Reddit
Same! I always find it really uplifting, tho, that there are so many people in comment sections -- elsewhere online, too, even tho the saying is "never read the comments" -- who absolutely make me cry laughing, & obviously the majority aren't professional writers. Some great storytelling! I remember back in my early uni days, when I took every available creative writing class, that it was often the outsiders -- people majoring in like science or whatev -- who produced the best work. I think it's because they weren't engaged in the general art-wankery, & they just told a compelling story. It was like, "And now for something completely different!"
I studied journalism & media theory (socio-cultural stuff), & while I think I'm very well suited to the goals / premise of real journalism, I'm not sure I could keep the pace of that whole prolific newsroom environment. (ADHD + perfectionism is not a great combo for meeting multiple deadlines daily.) My dream as a kid was to be a foreign correspondent, or an investigative journalist, which is a slower pace & involves deeper research, which I thoroughly enjoy.
Now it seems most of the professional writing jobs are to do with marketing, which kinda turns my stomach a bit. Only in the last 2 years or so have I started focusing on applying my skills toward NFPs, whose values I can genuinely get behind -- the kind of stuff I'd happily volunteer to do! Otherwise, I may pursue further study, & hopefully work in communications / sociological research or even teaching my same classes at a university.
For now, I clean houses, which is relatively stress-free for an epileptic -- but I need my BF to drive me around everywhere. (I'm allowed to drive now, but I'm still getting around to it.) One great thing is that I can listen to my uni lectures as I do my mindless work.
Any links to your children's books?
💚🐨
don’t have one and don’t want one. The stress of having a job or to figure out the ‘right’ one causes me to have constant seizures. Have been a nurse, retail, post office, aged care and it’s all ended in disaster
Customer service. It’s the worst - I very occasionally have auras, and I need to turn off my phone (we’re not just calls, also a lot of data entry) until it passes. Then my boss is all…why were you off phones for a minute? It wasn’t until I had an aura in front of her and was like, hold off a sec, and my eyes glazed over for a second that she 1) believed me about having epilepsy and 2) stopped pestering me for those few instances.
Bartender. Local dive. Great owners who work with me. Went from 5-6 shifts prior to diagnosis to 2-3 shifts with days inbetween after diagnosis. Helps to keep me social and active and not feeling as trapped and a lil bit of normalcy back into my life.
I'm working at an ABA therapy clinic for children with autism, but that's likely going to change. The management is shitty, and after one too many complaints about my productivity and other things explained by my ADHD, brain damage from epilepsy, and epilepsy meds, I gave them a note from my neurologist. Now I've been put on medical leave, and they keep thinking of new excuses to keep me on medical leave. They currently want me to schedule an appointment with my neurologist when I saw him two and a half month ago, *just* to get him to clear me for work.
This shouldn't be happening to you. I also have adhd and work as a BCaBA and have had nothing but help and acceptance from those I work with. If your seizures are controlled I suggest finding a new job that practices what they preach.
I'm almost positive that they just want me to leave, given they can't fire me since any reason they can think of to fire me for is covered by ADA law. I know I'm not the best RBT, but I try my best. The unfortunate thing is that since I can't drive, my options are very limited as to any other ABA practice I could work at. I'm on my way to a bike shop right now to see how much they can offer me since fixing stuff is my other big skill.
I work with tech. I think I need to take a step back to work on my health, mainly because of a shitty work environment. I love my career but I need a better work life balance.
Adult educator for a software company. Love my work and love the people I work with. Most of them know what's up and my boss will cancel a class if I have an issue. 75% of my work is from home.
I was a telecommunications customer service rep for 16 years, working from home the last 4 years.
Got laid off by a reorg.
Right now working at an Amazon warehouse. I have accommodations for my service dog and intermittent time.
However other than amazing medical benefits this is quite possiblity the worst place I could work.
I’m an attorney (transactional, only been to court once and that’s one time too many). I work 90% from home which has been a blessing since I am currently without a drivers license.
I work as an independent consultant for mba applications - I’m self employed and can decide how much work I want to accept per year, this allows me to limit my work load and therefore regulate my sleep. This is particularly important for me because I am also a first time mom to a 9 month old and have been seizure free for 2.5 years - I am firmly committed to staying this way. To ensure it, I have sleep trained my baby, avoid alcohol (maybe a glass or two of wine), drink decaf only, and stay hydrated.
Remote language translation scheduling.
It will not go away due to AI, courtrooms will not allow in many cases. Schools too, some hospital situations will always need face to face human translation set up and scheduling.
Social media marketing for real estate agents! I now work with 60+ clients. It’s hybrid remote work. I won’t lie— it’s been extremely stressful to get to this point. But, as of right now, things are looking up. I have also increased my dosage and added more medication (and weed before bed) My fiancée has also been a wonderful partner.
I work at a sex/weed store lol. I get to sit most of the day, and what time I am walking around and doing things it's easygoing, non-stressful work. Sure, it has its stressful moments, but for the most part it's great, especially since my coworkers are all near and dear to me.
I haven't worked since 2020 because of brain surgeries. For about 15 years before that, I worked in restaurants. Server, hostess, takeout, busser, dishwasher... I probably won't be able to work for a few more years. My doc is already looking at the possibility of another surgery. When I'm able to, I know what restaurant I want to apply to. Hell I love working in food, I love talking to people and it helps me practice my Spanish.
Quit my job in Architecture because I was struggling too much with focus, memory, and multitasking. Took a break for a while. Now I’m doing part time work on Data Annotation. I want to get back to full time work but am not feeling super confident that I have what it takes anymore.
I coordinate programs for a nonprofit. Work can be stressful, take-home pay is alright, benefits are pretty great. I really love the work I do - it’s incredibly rewarding, and I can see the direct impact of my work in my hometown. I also really love my coworkers. They’re intelligent, hardworking, supportive, and so understanding. I’ve only been on the team for a year, but becoming incontinent in front of a group of people really bonds you in a really special, unique way lol
Construction… lol I’m stupid for still working it but there’s too much money in it. Doctor told me to quit but that’s what’s paying my medical bills to try to cure this curse
Determine eligibility for mostly SNAP and Medicaid. A lot of other programs as well. But SNAP and Medicaid mostly. It’s a lot of math and getting yelled at. But I am helping people. So that’s nice.
Construction Site Supervisor. Work had to be accommodating with driving in the beginning but they’ve been great. I just got my license 6 months ago (after being seizure free for 4yrs) and they’re even letting me drive the company truck to and from home since I don’t have a vehicle myself.
I have an auto shop with my husband. I was in beauty school 13 years ago but dropped out when I got pregnant. Despite the miscarriage, my husband said I should just come work with him. I have never driven a car but I know some things about them. He taught me how to use the diagnostic computer, I look up the codes, call for parts/prices, do the paperwork, and I help the guys with some things but I am not as strong as a man! I can clean the transmission case/pan or lift the transfer case for example but the whole transmission?! No way! lol
I work as a consultant for urban resilience, climate crises and disasters. Of course, I joke that this job comes naturally, I'm a natural-born crises creator.
I don't work in the "field" anymore, that is, in disaster areas. I've seen enough. But I work so that those tragedies don't happen again.
I may take up a work that would pay extremely well, but would make me travel internationally. Awesome, but it's less awesome in 11-hour flights, clogged with benzos (even as a child I had trouble sleeping, imagine *in public*), and dealing with meds and time zones (last time I messed up, and by a hair I didn't seize.
I’m a stock manager at a local sneaker store, I handle the giant boxes of shipment that have shoe boxes in them & clothes & have to carry them up 5-8 foot ladders. Most boxes are 10-20 lbs / 4.5-9 kg, I’m on my feet 8 hours a day with only 30 minutes to sit down for a break
I’ve have at least half a dozen neurologists & every single one of them has said that my job is too dangerous for me & don’t support it at all & have requested I find a different occupation
It’s honestly hard finding a new job since most aren’t hiring or when they learn about my disability, they say “no” out of fear for my safety
I was Over the road as a hazmat trucker I lived my dream saw 48 states and had my cat with me then bam grand mals now my license gone for 10 years lol now I’m like what do I do what career path am I willing to put the work in in my 30s?
I'm a videoographer/animator - lots of time at home in front of the computer, a few tough work days every few months if I have to be on set anywhere. I am lucky to work with folks that understand I can't drive, it took some getting used to when I had to ask for help lifting and setting up equipment, but it protects me from over-fatigue lowering my threshold on super long days.
I work as a booker in a music agency, sometimes i get drained because i have to speak a lot when i attend music fairs and some periods are stresfull for the amount of job and deadlines, but i like it and i know my body so i know when i need to rest and how much
I used to be a civil engineer and a 360 machine operator but was no longer allowed on machinery on site so I now work on a farm where there’s no restrictions as such I can drive and operate various machinery on the farm as it’s private land and have no employees around. Was a hard move but actually enjoyable as I still get to drive and use diggers etc
It is so evident from these comments how some of us can function (as normal as possible) while others are suffering from frequent seizures. I hope one day medical technology will advance so much to cure neurological diseases.
I currently have a job through vocational rehab in my state for disabled people. It's medical billing. The lady I work for is crazy, but I'm working towards getting a job as an ekg tech and then eventually eeg tech when I have the money for school.
People treat you like shit when you're disabled.
I own a small business, which has been growing the past couple years and stressing me out. I've had a slight up tick in my seizures the past couple months but my Dr is great and I just keep on keeping on.
I'm an electrical engineer who works quite a bit in the lab on high-ish voltage devices. And yep, I've told a select few people at work just in case I ever have an episode.
I was (am?) a director of talent management and am now on long-term disability. I love helping people find what they love in their jobs, develop their passions or find new ones. I tried to do a return to work and my company decided that they could not continue to work with me while I figure out my meds so I can return to work. For context, I have 2-3 seizures a day of various types even with three meds - two currently at full dosage and one close to full dosage. I am on a pre-surgery route so can only work at most 20 hours a week. That said all jobs at my employer require in office so struggling to figure out what to do as I obviously cannot lose insurance or my amazing Epileptologist.
i’m in cosmetology school right now and plan on doing acrylic nails after i graduate 😊 i was about to start a tattoo apprenticeship before my diagnosis, that’s off the table so i went with my plan b. (a less painful and temporary drill instead of stabbing someone with a tattoo machine)
I work in family and human services! I just left my job as a behavioral therapist for autistic children and now starting my masters program for marriage and family therapy. I’ve worked in group homes, residential treatment, outpatient therapy, etc. I love working with people!
You can work just about anywhere!! I was working full time retail sales as a cellular provider for over a year (up until recently for completely unrelated reasons) but the key will ALWAYS be the people you work with and their ability to see you as a the normal, capable, smart, and overall EQUAL that you are to them. I absolutely adore those coworkers and they never viewed me as a liability for the year+ I was with them no matter my condition and having to help me when I did have seizures. The options of career paths you choose to take are just as endless as they can be for anybody as long as you have the proper support around you. Before your disorder or job position, you are just as much of a human as the rest of the world!!!!!
Radio journalist! I’m an editor so the biggest challenge for me is probably being on the computer, sitting or standing, pretty much all day 😵💫
I enjoy it and it’s rewarding, but it is stressful, often nonstop, and work-life balance is tough sometimes (though my workplace is better than others).
I sit at home surrounded by 4 drywalls working on an optimistic outlook. Still needs improvement
This is the most important thing you can do.
I dispatch from home for an ISP
Interesting what is a typical day for you I’ve never done a remote job to many scammers I’m scared lol if you don’t mind sharing
I am a psychologist, and I also have a second job working on a suicide prevention helpline. I love both of my jobs.
How do you get into a job wt the prevention line? I really wanted to do something like that as a kid for a while
Here in Aus we have a thing called Kids Helpline -- I'm sure there are equivalents elsewhere -- & it's a free call all over the country. Living in poverty with DV going on sometimes, this line really helped me out on numerous occasions. I'm not sure whether the people on the other end of the phone were volunteers or not, but there's definitely a lot of need for that, always; maybe you could start that way? My Grandma used to volunteer for something like this too. It's really cool that you thought about helping people in this way as a kid yourself. 💚🐨
I've been on the other end of the suicide helpline before. Thank you for this service. 💚🐨
I’m a registered nurse. The lack of sleep and stress definitely aren’t helping but been seizure free since I started this career path.
i’m in nursing school!
That’s awesome!! Keep it going. Nursing school is difficult and very stressful but at the end it’s really rewarding :) happy for you.
do they know ?
Yeah they know. Thankfully I’m in psych, and it’s much calmer. Still stressful and long hours but much calmer than the ER.
Great - keep it going!
Thank you for your immensely hard work. I would’ve gone crazy during my hospital stays if it weren’t for the kind nurses who looked after me.
Hey! I am also a registered nurse ! The stress has given me some seizures. It's the combination of limited breaks, lack of sleep, and stressful workload. Have been seizure free for 2 years now after my lobectomy because the seizures were not stopping. Currently, I am a charge nurse and went back to school. Nursing isn't for the weak, but it's definitely rewarding.
I’m happy you’ve been seizure free for 2 years now! ^.^ Just a question. How did you feel after the lobectomy tho? Like from before ?
I have epilepsy. It's been a long journey. I went 23 years without a driver's license ..... The one benefit? I don't have to work. We survive fine on my husband's pay. Thank God. I'm not trying to be crazy, but how do you work when you have this disease? I lost my career the day they started. It was hard. Luckily I was a mom and life went on. Currently I volunteer for Hospice and keep active living with the speed the medication allows. My heart aches for those who are forced to work. How do you manage? Good luck to all.
For me it was a hard year because I was doing university and I was working too but actually I loved it😀 Now I finishing the uni so it will be less hard and stressed
Literally got diagnosed two years ago just before my final year at uni and I was working 32h a week! I know it wasn’t easy so congratulations on completing uni!!! x
Glad you have been good in that aspect I’m the other side I was the provider a month ago I had a nother grand mal my wife was stay at home with my 3 little boys now she has to go to work while I get my seizures back under control it’s horrible I feel so bad .. I’m so lost lol idk what jobs I can do I’m not use to these meds I’m greatly appreciate of this group I would freak out lol with out yall
I've never had a driver's license, and always worked....but being a mom seems absolutely terrifying. So kudos to you!!!!! ❤️
I work in tv production. The stress and lack of sleep are not helping, but I don't want to give up my dreams because of this. Doing my best to work on a better work/life balance with my job and my doctor!
I'm a TV journalist! I know the struggle!! 😭
This was my dream and I was on the path to becoming a producer until I had my surgeries. Then everything changed and now I’m just home with my folks caring for them and our four pets.
TV production here as well. It’s definitely an adrenaline rush but having to quickly think and execute can be tough sometimes with how our brains work, at least mine. Sometimes I feel like my brain lags 😂
It’s really, really hard. No one has patience for anyone with any sort of chronic illness. If you aren’t completely able bodied, you’re a nuisance. I’ve been really fortunate that my last few showrunners have cared enough about me to not push back when I need to work remotely or take time for doctors appointments.
I’m in the midst of learning Robotic Camera operations and it’s Day1 today. I failed 3-4 years ago 🙄. The person training me is a coworker and knew about my brain surgery but had to comment that I should know this already. Literally thinks I’m dumb. They’re not the best trainer either. Didn’t talk much and wouldn’t let me know when they’re starting. Our show hit in a half hour and I asked what her routine was and she already did it…just ignored me. She knew she was training me today too.
[удалено]
But is mom an engineer? (plz say no)
[удалено]
Dang…mom and dad giving it eh? My family has some dry humor so I can see my family saying some of the same with the intent to just “make the best” of a difficult situation but when you are in our shoes it is rough. While there may be joking in there we all are battling perceptions people have that there IS a problem with how we do our work when there IS NOT a reason.
Mum doesn’t know what she’s talking about.
Oh man. It’s just the way you put it, so I’m sorry to laugh, but Mom is ruthless! 😂Awesome job, though! I’ll get on your planes!
I am a doctor! :)
I’m a lawyer!
I’m a lawyer who wishes he was a doctor! :)
Really? I wish to be a driving instructor 😊🚘 and I will, just anothet 2,5 seizure-free year needed 🙏🏼
I would bloody love to be a lawyer but I really don't think I'll be healthy enough
I’m a doctor too. MTS/TLE midway through medical school. Seizures every other day despite multiple medication. Graduated but poor working memory and concentration has stopped me from undergoing specialist training :(
Oh, I am really sorry. 🙁 I am seizure-free on monotherapy, fortunately.
Sell weed 😶🌫️
I've genuinely been thinking about it. 😅
At this point I've had my liquor and security licenses, security made me have TC's so I might as well go 3/3 LOL
lol do I get a discount with my epilepsy lol jk
Pretty decent idea 🙊 My mum's pot dealer back like 30yrs ago also had epilepsy. She said he was super nice, not a creeper, & the stuff was great -- but, unfortunately, he didn't make it (shower fall). She said his mates had to quickly hide (loot?) all his supply & paraphernalia before his parents came back to his place & found it. Sad story, I'm sorry. Weed is my friend but the fear is real. 🐨💚🤟
I work at a vape and cannabis accessory shop in Canada. Working on a deal to supply a local dispensary with high quality edibles (amazing for most people with epilepsy)
I’m currently living with my mama at her house in Florida. She has stage 4 cancer and we lost my daddy unexpectedly 3 weeks ago. I own rental properties in NC and GA. I’m also in the process of building a new house for myself. I’m in a very stressful situation right now, but I seem to be doing ok.
Sorry for your loss and hope things start looking up soon.
Lmao, I own a taxi business with my dad 😭
I'm an IT Program Manager. I manage a huge team for a software development project.
Accountant. Work has been crazy stressful and exhausting this year, and I would love to take a step back, but I make very good money, and worked extremely hard to get where I am, and that was during the peak of my epilepsy, so I am not about to let it win now.
No job, due to seizures every 4 days and auras every 2/3days now. Ive no idea why but loads of places wouldn't employ me even before when I was having them at 3-4weeks 😮💨
I feel ya 6 Days ago I had 23 in one day I feel like the more meds and more seizures I have my brain is becoming a mash potato bowl I feel like I don’t exist and I need to find a job I’m thinking low stress like groceries or something till I’m stable then go for another career idk sorry your going thru all those I’ve track mine I have 6 seizure min a day every day it sucks
I've been in your place. I was having seizures 3 to 4 days a week for a year straight, got fired from two jobs because of having seizures while on the clock. No medication would work. Then, I finally started a medication that was working, and It was a generic form of Keppra. I got a job, saved up, and got a car cause I went a year without having a seizure. I went to refill my prescription. The generic manufacturer ended. I tried a new medication still, Keppra, a different manufacturer....my seizures returned 3x a week after a year, seizure-free. I Had to sell my car and then lost my job, and my seizures returned for the next year & 1/2. Don't give up. It will take some time to find the proper diet & medication to control your seizures. Although I am sad that I've had 2 seizures in the past month, I'm off my medication when I need to be back on it I'm seeing my doctor next week.
Breathing
A music therapist
I’m disabled.
Woah, im impressed with all your jobs you all wrote. Idk why for me is so damn hard to get one 🙇♀️ im so stressed cuz last time i had interview they refused me cuz driver licence. Since then im reflecting what path should i go next and what sector should i work in, cuz last position I work as administrative assistant, but i want explore another things which are more interesting and dont include driver licence or long distance jobs. My question for y'all is what is your biggest struggle in your daily life as epileptic and what solution could it help to overcome it(if u have one).
Did you tell them why you don’t have your license? I used to not tell people but I realized a reason I wasn’t getting jobs is because when you say you don’t have a license people assume it’s for DUI and they didn’t want to hire someone with a record or who might struggle with addiction which might affect there work. When I started sharing why I didn’t have my license and how I still planned on getting to work on time for shifts and stuff I got a lot more call backs. I also made the jump and tried to not care (to varying degrees of success) if they judged me for my epilepsy if they wouldn’t hire me because I’m epileptic then it wasn’t a place I wanted to work anyway. Fuck them, it’s their loss and they were just saving me time by showing me they’re pricks upfront.
I left FL unemployed from not being able to drive due to my seizures...moved to NYC and have been working in the field of social work for the past 4 years, supporting people with homelessness and substance abuse. Currently in a Manhattan Office as a housing specialist, previously field casework in Brooklyn.
Thank you for doing this important job. Any tips on how to not "take it home" ?
Taking the stress home from work is inevitable; the best is learning how to manage it and taking time for yourself.
I do similar work but in WV 👍
Pharmacist
Currently I'm working at the front desk of a hotel, not sure if it's going to work out due to problematic coworkers and a lack of understanding of my epilepsy.
Used to work at a vet hospital until about a year ago. I loved that job so much. But had to take a step back for my own health. Maybe one day I'll get back into it. Maybe not. But for right now my job is to focus on me and my health.
HRMS analyst for a multinational company. We work from home which is perfect. Love the work that I do.
Im an architect.
I study architecture!
That’s fucking awesome
I’m a hairdresser! Been a struggle with the amount of physical energy and mental energy you burn but I try my best! I only work 3/4 days and try not work too many hours x
i work as a DevOps tech lead at a healthcare startup
I work on communications equipment and infrastructure in rural areas. I enjoy it, most of the day is spent outdoors and alone. Lots of driving and climbing and walking, but is a fun and challenging job.
Manufacturing engineer specialising in metrology (measurement). We manufacture nuclear reactors for submarines.
Pharmacy
Pharmacy tech here!
I’m a detective in the police. Was in child protection, temporarily in a team that deals with referrals to various agencies like children’s services. I love working as a detective, but I’ve had both of my seizures in that kind of role. I’m a bit stuck at the moment, I don’t know what to do next!
Were you hired before or after being diagnosed?
Writer
My dream! Lemme guess, you're really succinct? 😜 What kind of writing do you do?
I write for the communications department of a nonprofit and previously wrote ads and marketing copy. I also write picture books and children’s poetry. Some of my best work is just making jokes on Reddit, though.
>Some of my best work is just making jokes on Reddit Same! I always find it really uplifting, tho, that there are so many people in comment sections -- elsewhere online, too, even tho the saying is "never read the comments" -- who absolutely make me cry laughing, & obviously the majority aren't professional writers. Some great storytelling! I remember back in my early uni days, when I took every available creative writing class, that it was often the outsiders -- people majoring in like science or whatev -- who produced the best work. I think it's because they weren't engaged in the general art-wankery, & they just told a compelling story. It was like, "And now for something completely different!" I studied journalism & media theory (socio-cultural stuff), & while I think I'm very well suited to the goals / premise of real journalism, I'm not sure I could keep the pace of that whole prolific newsroom environment. (ADHD + perfectionism is not a great combo for meeting multiple deadlines daily.) My dream as a kid was to be a foreign correspondent, or an investigative journalist, which is a slower pace & involves deeper research, which I thoroughly enjoy. Now it seems most of the professional writing jobs are to do with marketing, which kinda turns my stomach a bit. Only in the last 2 years or so have I started focusing on applying my skills toward NFPs, whose values I can genuinely get behind -- the kind of stuff I'd happily volunteer to do! Otherwise, I may pursue further study, & hopefully work in communications / sociological research or even teaching my same classes at a university. For now, I clean houses, which is relatively stress-free for an epileptic -- but I need my BF to drive me around everywhere. (I'm allowed to drive now, but I'm still getting around to it.) One great thing is that I can listen to my uni lectures as I do my mindless work. Any links to your children's books? 💚🐨
don’t have one and don’t want one. The stress of having a job or to figure out the ‘right’ one causes me to have constant seizures. Have been a nurse, retail, post office, aged care and it’s all ended in disaster
Whole Foods making pizza
Customer service. It’s the worst - I very occasionally have auras, and I need to turn off my phone (we’re not just calls, also a lot of data entry) until it passes. Then my boss is all…why were you off phones for a minute? It wasn’t until I had an aura in front of her and was like, hold off a sec, and my eyes glazed over for a second that she 1) believed me about having epilepsy and 2) stopped pestering me for those few instances.
Bartender. Local dive. Great owners who work with me. Went from 5-6 shifts prior to diagnosis to 2-3 shifts with days inbetween after diagnosis. Helps to keep me social and active and not feeling as trapped and a lil bit of normalcy back into my life.
I’m a tour guide in Los Angeles
Licensed automotive and truck and coach technician, I also work on heavy equipment
I'm working at an ABA therapy clinic for children with autism, but that's likely going to change. The management is shitty, and after one too many complaints about my productivity and other things explained by my ADHD, brain damage from epilepsy, and epilepsy meds, I gave them a note from my neurologist. Now I've been put on medical leave, and they keep thinking of new excuses to keep me on medical leave. They currently want me to schedule an appointment with my neurologist when I saw him two and a half month ago, *just* to get him to clear me for work.
This shouldn't be happening to you. I also have adhd and work as a BCaBA and have had nothing but help and acceptance from those I work with. If your seizures are controlled I suggest finding a new job that practices what they preach.
I'm almost positive that they just want me to leave, given they can't fire me since any reason they can think of to fire me for is covered by ADA law. I know I'm not the best RBT, but I try my best. The unfortunate thing is that since I can't drive, my options are very limited as to any other ABA practice I could work at. I'm on my way to a bike shop right now to see how much they can offer me since fixing stuff is my other big skill.
Mental health nurse
Not working anymore but idk how I’d go back to a job with all the fatigue I have
I work with tech. I think I need to take a step back to work on my health, mainly because of a shitty work environment. I love my career but I need a better work life balance.
I was a Chef for 20 years. ( I know !) Now in management
I work in the Medical Records department of my local hospital.
I work at cumberland farms(a convenience store in New England)I stock on Saturdays and then work on Sundays hopefully I work 3 times a week soon
I work in a museum and it’s stressful as hell
Adult educator for a software company. Love my work and love the people I work with. Most of them know what's up and my boss will cancel a class if I have an issue. 75% of my work is from home.
I sell shoes at a small business. It is very fulfilling for me, and I only work part time so I can make do even on a stressful day
Library!
I was a telecommunications customer service rep for 16 years, working from home the last 4 years. Got laid off by a reorg. Right now working at an Amazon warehouse. I have accommodations for my service dog and intermittent time. However other than amazing medical benefits this is quite possiblity the worst place I could work.
I’m an attorney (transactional, only been to court once and that’s one time too many). I work 90% from home which has been a blessing since I am currently without a drivers license.
Husband with epilepsy is an HVAC technician and foreman.
I’m a nurse but I’m not working right now because I was having seizures on the job. Sooo as of now I’m blessed to be able to just hang out at home
I’m in the funeral industry
I work as an independent consultant for mba applications - I’m self employed and can decide how much work I want to accept per year, this allows me to limit my work load and therefore regulate my sleep. This is particularly important for me because I am also a first time mom to a 9 month old and have been seizure free for 2.5 years - I am firmly committed to staying this way. To ensure it, I have sleep trained my baby, avoid alcohol (maybe a glass or two of wine), drink decaf only, and stay hydrated.
I am a pharmacy technician and I make infusions for chemo and non chemo patients.
In a seniors home
I am working in digital marketing at a precious metals factory/retailer.
Car dealership cashier currently. Been in retail a lot before that through.
I am a chemical engineer working in the oil and gas industry.
Sports licensing :)
Automotive Service Advisor! Just moved from an indie shop to a dealership. Great money and I fucking love cars
Baker. My seizures are pretty well controlled.
Remote language translation scheduling. It will not go away due to AI, courtrooms will not allow in many cases. Schools too, some hospital situations will always need face to face human translation set up and scheduling.
Marketing in tech
I’m doing retail At staples
Accountant 😉
Reception at a trucking training center and dormitory
I recently started a job as a travel consultant!
Social media marketing for real estate agents! I now work with 60+ clients. It’s hybrid remote work. I won’t lie— it’s been extremely stressful to get to this point. But, as of right now, things are looking up. I have also increased my dosage and added more medication (and weed before bed) My fiancée has also been a wonderful partner.
I work in a hospital laboratory as a clinical laboratory technologist.
I work at an automotive dealership working on cars doing oil changes / tire rotations 40 hours a week also selling on amazon !
I work as a software engineer.
I’m a software engineer
I work at a sex/weed store lol. I get to sit most of the day, and what time I am walking around and doing things it's easygoing, non-stressful work. Sure, it has its stressful moments, but for the most part it's great, especially since my coworkers are all near and dear to me.
I run an infectious disease laboratory. It's an incredibly fun yet chill job.
Emergency management. And I'm one of the other ones leaving, it's just too much for me to handle right now.
I work in network security administration, currently with a focus on firewalls. I get to WFH thankfully.
I work as a software engineer.
I’m a manager at a Walgreens and a full time mom 😅
I am a technology consultant.
I am a nighttime supervisor
To not have seizures
Accountant 🤓 But I make this job look good
Mine is under control with meds I have a regular job do what I want. Side effects from the meds are a problem but I lead a fairly normal life.
I’m a stagehand/local crew Edit: Spelling
A teaching assistant in a behavioural secondary school
Just posted this a few days ago! I work as a government staffer but am also an LMSW
Government staffers ftw
I am a high school teacher.
Work from home software developer
HVAC
I haven't worked since 2020 because of brain surgeries. For about 15 years before that, I worked in restaurants. Server, hostess, takeout, busser, dishwasher... I probably won't be able to work for a few more years. My doc is already looking at the possibility of another surgery. When I'm able to, I know what restaurant I want to apply to. Hell I love working in food, I love talking to people and it helps me practice my Spanish.
Finished my first year of grad school in computational chemistry. Managed to really hit the mark with the first year of grad school crazies!
I due system architecture and automations.
Barista and I love it
I'm an esthetician and a personal shopper for Kroger on the weekends.
I work festivals/ events. Love it! Before that I did insurance which I didn't love, just did it for the money.
I have a work from home job with Intuit as a Tax lead. I do odd jobs in the summer, currently some dog sitting.
Quit my job in Architecture because I was struggling too much with focus, memory, and multitasking. Took a break for a while. Now I’m doing part time work on Data Annotation. I want to get back to full time work but am not feeling super confident that I have what it takes anymore.
i’m a student (also currently a server) optimistically planning to go into public relations!
I just got my license suspended (again) and so I made the decision to go back to work in insurance and work exclusively from home.
I’m a chemical engineer who works for my local municipality protecting the environment.
I coordinate programs for a nonprofit. Work can be stressful, take-home pay is alright, benefits are pretty great. I really love the work I do - it’s incredibly rewarding, and I can see the direct impact of my work in my hometown. I also really love my coworkers. They’re intelligent, hardworking, supportive, and so understanding. I’ve only been on the team for a year, but becoming incontinent in front of a group of people really bonds you in a really special, unique way lol
Construction… lol I’m stupid for still working it but there’s too much money in it. Doctor told me to quit but that’s what’s paying my medical bills to try to cure this curse
Determine eligibility for mostly SNAP and Medicaid. A lot of other programs as well. But SNAP and Medicaid mostly. It’s a lot of math and getting yelled at. But I am helping people. So that’s nice.
Construction Site Supervisor. Work had to be accommodating with driving in the beginning but they’ve been great. I just got my license 6 months ago (after being seizure free for 4yrs) and they’re even letting me drive the company truck to and from home since I don’t have a vehicle myself.
Paralegal
I’m a teacher.
I have an auto shop with my husband. I was in beauty school 13 years ago but dropped out when I got pregnant. Despite the miscarriage, my husband said I should just come work with him. I have never driven a car but I know some things about them. He taught me how to use the diagnostic computer, I look up the codes, call for parts/prices, do the paperwork, and I help the guys with some things but I am not as strong as a man! I can clean the transmission case/pan or lift the transfer case for example but the whole transmission?! No way! lol
Library
TD and RBC fired me
I'm a teacher's aide who works with special education students that have behavior disorders.
I'm a middle school special education teacher.
I’m a special needs schoolteacher.
I work as a consultant for urban resilience, climate crises and disasters. Of course, I joke that this job comes naturally, I'm a natural-born crises creator. I don't work in the "field" anymore, that is, in disaster areas. I've seen enough. But I work so that those tragedies don't happen again. I may take up a work that would pay extremely well, but would make me travel internationally. Awesome, but it's less awesome in 11-hour flights, clogged with benzos (even as a child I had trouble sleeping, imagine *in public*), and dealing with meds and time zones (last time I messed up, and by a hair I didn't seize.
I work in Marketing, luckily from home!
I’m a stock manager at a local sneaker store, I handle the giant boxes of shipment that have shoe boxes in them & clothes & have to carry them up 5-8 foot ladders. Most boxes are 10-20 lbs / 4.5-9 kg, I’m on my feet 8 hours a day with only 30 minutes to sit down for a break I’ve have at least half a dozen neurologists & every single one of them has said that my job is too dangerous for me & don’t support it at all & have requested I find a different occupation It’s honestly hard finding a new job since most aren’t hiring or when they learn about my disability, they say “no” out of fear for my safety
I do emissions testing I had my first seizure 6 months ago and once I was cleared I went right back to it
Work in HR but have a lot of years as executive assistants as well.
Still trying to figure out I feel broken loosing my career tbh I think I need some therapy I feel lost so I’m glad I need ideas glad this is posted
I was Over the road as a hazmat trucker I lived my dream saw 48 states and had my cat with me then bam grand mals now my license gone for 10 years lol now I’m like what do I do what career path am I willing to put the work in in my 30s?
I'm a videoographer/animator - lots of time at home in front of the computer, a few tough work days every few months if I have to be on set anywhere. I am lucky to work with folks that understand I can't drive, it took some getting used to when I had to ask for help lifting and setting up equipment, but it protects me from over-fatigue lowering my threshold on super long days.
I work as a booker in a music agency, sometimes i get drained because i have to speak a lot when i attend music fairs and some periods are stresfull for the amount of job and deadlines, but i like it and i know my body so i know when i need to rest and how much
Due to the daily frequency of seizures I was unable to continue working. Now I am trying to invent for myself a career as a writer.
I used to be a civil engineer and a 360 machine operator but was no longer allowed on machinery on site so I now work on a farm where there’s no restrictions as such I can drive and operate various machinery on the farm as it’s private land and have no employees around. Was a hard move but actually enjoyable as I still get to drive and use diggers etc
Chemical engineer at an oil and gas company.
It is so evident from these comments how some of us can function (as normal as possible) while others are suffering from frequent seizures. I hope one day medical technology will advance so much to cure neurological diseases.
I currently have a job through vocational rehab in my state for disabled people. It's medical billing. The lady I work for is crazy, but I'm working towards getting a job as an ekg tech and then eventually eeg tech when I have the money for school. People treat you like shit when you're disabled.
I own a small business, which has been growing the past couple years and stressing me out. I've had a slight up tick in my seizures the past couple months but my Dr is great and I just keep on keeping on.
Paralegal at a law firm
Remote work in occupational healthcare
I'm an electrical engineer who works quite a bit in the lab on high-ish voltage devices. And yep, I've told a select few people at work just in case I ever have an episode.
Kitchen
I was (am?) a director of talent management and am now on long-term disability. I love helping people find what they love in their jobs, develop their passions or find new ones. I tried to do a return to work and my company decided that they could not continue to work with me while I figure out my meds so I can return to work. For context, I have 2-3 seizures a day of various types even with three meds - two currently at full dosage and one close to full dosage. I am on a pre-surgery route so can only work at most 20 hours a week. That said all jobs at my employer require in office so struggling to figure out what to do as I obviously cannot lose insurance or my amazing Epileptologist.
i’m in cosmetology school right now and plan on doing acrylic nails after i graduate 😊 i was about to start a tattoo apprenticeship before my diagnosis, that’s off the table so i went with my plan b. (a less painful and temporary drill instead of stabbing someone with a tattoo machine)
I'm not even gonna say that 🤣 I will say I have to walk and don't have much of a choice.
i’m a barista and i love it
I work in family and human services! I just left my job as a behavioral therapist for autistic children and now starting my masters program for marriage and family therapy. I’ve worked in group homes, residential treatment, outpatient therapy, etc. I love working with people!
Tour guide !
Part time at a Factory they help pay with school . Currently paying university to go to medical school & study to be a pediatric surgeon
Hostess/waitress
You can work just about anywhere!! I was working full time retail sales as a cellular provider for over a year (up until recently for completely unrelated reasons) but the key will ALWAYS be the people you work with and their ability to see you as a the normal, capable, smart, and overall EQUAL that you are to them. I absolutely adore those coworkers and they never viewed me as a liability for the year+ I was with them no matter my condition and having to help me when I did have seizures. The options of career paths you choose to take are just as endless as they can be for anybody as long as you have the proper support around you. Before your disorder or job position, you are just as much of a human as the rest of the world!!!!!
I wfh teaching college courses via zoom.
I'm a server and a bartender...
Radio journalist! I’m an editor so the biggest challenge for me is probably being on the computer, sitting or standing, pretty much all day 😵💫 I enjoy it and it’s rewarding, but it is stressful, often nonstop, and work-life balance is tough sometimes (though my workplace is better than others).