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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Getting a job with epilepsy

15 replies

Drummend01 · 14/07/2023 14:51

My brothers girlfriend has been diagnosed with epilepsy. It’s been a long process over a couple of years, her family are quite absent. My parents, brother and I have been a big support for her. Its finally under control (mostly) with medication, she was having seizures almost weekly but hasn’t had one since May.

She has a council flat but she doesn’t like staying there (understandably, she’s a young girl and the place is quite rough) so lives with my parents and brother 4/5 nights a week.

She gets some benefits and doesn’t go without, a lot of new shoes, nails done, hair done etc. My brother works hard, long shifts, night shifts etc and pays for most things for her. My parents don’t charge rent and cook for them regularly, buy them takeaways etc. (I know this is their own business to say if it bothers them) but it makes me question how motivated she is to work because my family make her so comfortable.

My parents asked her if she’s considering getting a job but she’s always quite vague and said everywhere she applies say no based on her epilepsy. I thought they couldn’t discriminate based on disabilities, is that allowed? It’s mostly shop work like a supermarket. She doesn’t seem that bothered but maybe I’m being harsh and uneducated about the lack of opportunities for those with epilepsy.

Ultimately it’s not my money, I don’t live there and she’s a nice girl, so I don’t get involved but I’m interested to understand better and educate myself

OP posts:
ComtesseDeSpair · 14/07/2023 15:05

If until just a few weeks ago she was having seizures at least once a week and then enduring the post-seizure wipeout and recovery, I don’t think it’s particularly surprising that finding employment hasn’t been either easy or an immediate priority for her. There aren’t many employers who would accommodate that, and with it being so unpredictable when she might feel well and when she might not, I imagine her confidence and concept of agency must be rock bottom. Your parents are obviously keen for her to be more self-reliant, but it sounds as though they should be encouraging her and your brother to live in her flat, with perhaps some support, rather than badgering her. Does she have a disability social worker?

I feel quite sorry for her, to be honest. When I think of the rich life I’ve lived and all the fun and adventures and opportunities I’ve had, it doesn’t sound like much of a life that she has in comparison, living in a boyfriend’s parent’s spare bedroom on their dine and rules sounds like a pretty shit life, not at all enviable. I hope she gains her confidence soon and improves things for herself.

Wertie · 14/07/2023 15:13

I’ve worked alongside colleagues in supermarkets with epilepsy. All 3 at times has very stressful ongoing absence procedures over and over. Union help and never sacked, but a massive stress and threats over time.
Also there is the public factor, having seizures in front of colleagues and the general public. People could be really really unkind, it’s hard to put yourself out there if seizures aren’t controlled. One colleague did have seizures every down and then on the shop floor.

PauliesWalnuts · 14/07/2023 15:14

My sibling had fairly severe epilepsy and didn't have a problem getting a job - he worked in insurance. Given the flexibility towards ED&I/disability these days there are employers who will guarantee an interview to someone who ticks one of those boxes.

Drummend01 · 14/07/2023 15:19

@ComtesseDeSpair I completely agree that she’s had a really rubbish couple of years, it must be hard for her and we have been as supportive as possible. I really hope that she remains seizure free. In defence of my parents they do not badger her, my brother mentioned she was considering applying for a local supermarket so my mum asked her how she got on and it’s only been a conversation a couple of times. They have limited rules and expect almost nothing for her in return.

My brother doesn’t want to rent right now, my parents have an agreement he can live for free at home as long as he’s saving a certain amount monthly to eventually buy somewhere.

Im not sure about a disability social worker, she hasn’t mentioned one

OP posts:
Avastmehearties · 14/07/2023 15:56

I have had epilepsy since being 19. Tonic clonic seizures ever 3 weeks at worst, currently a lot better controlled but still focal seizures every week or so. These aren't much to see but can really wipe me out.

What I will say is that it's a big thing to come to terms with, the medication can utterly bloody horrible to adjust to as can the 'invisible' effects of epilepsy, not just the full on seizures, thrashing around and peeing yourself etc that you see. Anxiety and depression are really common comorbidities for instance. Therefore my main advice would be to please not put pressure on her to fulfil the same goals you have set yourself at the same pace. Your expectations of her need to be adjusted.

However, I get the impression you are asking in good faith and it isn't all about your family bankrolling her (their concern as you say) so I am happy to share my experiences so you can consider helping her with a longer term plan if she wishes.

I don't know her strengths or ambitions (if all was equal). However, what do you think of discussing long terms goals with her rather than the type of work she is looking at which can be quite precarious employment with long hours, lighting etc that may affect her?

I worked at director level in the public sector and am now retraining in a clinical field so some people absolutely can work with epilepsy, especially when reasonably well controlled. I have also got 2 degrees, travelled extensively, worked abroad, learnt several languages and have done a lot of charity work and interests. But not all at once when I was only just getting my seizures controlled. 1-2 months seizure free is not cured.

However, if we are being realistic, certain jobs are more protected and more suitable than others.

I have had this condition whilst working in retail and hospitality as a student as well as whilst working my way up and frankly have experienced some open discrimination as well as managers being exasperated by me being late in yet again after another focal seizure. My advice is that where you work really makes a difference.

That is to say, some organisations have rock solid anti-discrimination policies that make your position a lot more secure even if your work is affected- reasonable adjustments etc.

There are only so many reasonable adjustments that can be put in place on a shop floor when the main one with epilepsy (in my experience) is that sometimes you simply can't be there.

I would recommend the public sector, for instance civil service or NHS admin.

This approach may alternatively involve looking at what she wants to do and accessing the training if it is more specialist. If she likes the idea of, say, HR or business management then she should look at how to get the qualifications needed to make a solid start in these, a degree maybe.

In my experience, a job where you're part of a big organisation that has deep rooted policies to support disabled staff and applicants, may be a lot easier than a bar or shop job when managing epilepsy. It is also easier if you're doing a role with some flexibility. This isn't compatible with all jobs but office/ WFH may be easier for her to work around her symptoms than shop floor.

Not saying these places are perfect of course but they have good sick leave and OH provision.

But with respect, I'm not sure this young woman is surrounded by people who fully understand her condition if you're writing about her getting her nails done when she's only just stopped having weekly seizures. This is bound to have been a very unsettling couple of years for her indeed.

drpet49 · 14/07/2023 16:07

Wow she’s playing a blinder. No
job. Getting your brother to pay for everything. Your parents cooking for her etc.

What is the female tequivalent of a cocklodger? Because she is absolutely taking the piss.

Drummend01 · 14/07/2023 16:16

@Avastmehearties thank you for your detailed reply. It’s great to see what opportunities there were for you and I hope she experiences the same.

You are right, we don’t fully understand her condition but that’s not through lack of trying. She is very vague, my parents asked her for more details about her diagnosis and medication (for safety reasons, they’ve had to ring ambulances for her numerous times while she’s fitting and get asked what medication she’s on etc, but she doesn’t give them that info). Perhaps this is her being private, which I understand, but also think it’s unfair on my parents to be put in that position when they’re trying to help.

I completely understand not rushing into a full time role right now, it’s early days. But I don’t see her having much ambition, she doesn’t express interest in any field for the future, says she doesn’t want to do any online qualifications but doesn’t have any qualifications other than GCSEs. Has never had a job, she’s mid twenties and only started having seizures at 22. But I’m unfairly judging, I’m not in her shoes. I hope she gains confidence once she’s feeling better and reaches her potential.

OP posts:
Drummend01 · 14/07/2023 16:20

@drpet49 thats too harsh and not what I was suggesting. Living with epilepsy is hard, she’s been to hospital more times in these last 2 years than I probably will in my whole life.

I don’t believe she’s deliberately taking the piss, my parents and brother could put their foot down if they wanted to. I was more questioning the opportunities there are for her long term, but it sounds positive from when people have said so I hope it works out for her

OP posts:
DamnUserName21 · 14/07/2023 16:20

Does she disclose she has epilepsy at interview? She does not need to--they shouldn't be asking. Big companies usually send out a post-offer (note post offer) health questionnaire on which she may disclose her condition. This may then be screened by occ health and they will usually follow up with the pre-employee for an assessment. Epilepsy is not a barrier to employment depending on the job role and control of the condition.
It is also protected under the Equalities Act.

DamnUserName21 · 14/07/2023 16:21

*equality act 2010

Drummend01 · 14/07/2023 16:25

@DamnUserName21 from the sounds of it she does tell them, I think the supermarket questioned why she didn’t have any employment history on her CV and she mentioned her epilepsy diagnosis. As for the others, I don’t know.

OP posts:
Rosieposy89 · 14/07/2023 16:25

I'd be worried about her claiming any means tested benefits whilst essentially cohabiting with a partner

Conkersinautumn · 14/07/2023 16:39

My mum had very restricted epilepsy so reasonably managed and relatively predictable. She managed to get work but only in the public sector despite excellent economics and accountancy qualifications. Private sector just see inclusion as a nod along exercise and she was always more qualified than her managers until she retired in public sector. Equalities is bs with disabilities.

I have worked with a guy with epilepsy in retail and the attitude of the managers was a challenge to him being there (he couldn't commit to any overtime as tiredness was a big trigger, obviously he tried to manage his condition but the orange supermarket viewed it as shirking).

Dontcallmescarface · 14/07/2023 16:44

DP has epilepsy and he has always worked. There are some jobs that he legally cannot do (HGV/Bus/train driving, working at heights/near water etc), but jobs such as shop work/factory/warehouse/call centres/ admin etc are fine although it does depend on the "triggers" so using a computer for a long time may induce a seizure. But as long as she takes regular breaks away from the screen and/or wears tinted lensed glasses then it may reduce the risk.

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