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Hi, my name is nebulrwas! at work i am being accused of being lazy and a shirker

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nebulrwas
nebulrwas Community member Posts: 11 Listener
edited November 2022 in Work and employment
hi, are there any others out there who have been diagnosed with myasthenia gravis.
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  • nebulrwas
    nebulrwas Community member Posts: 11 Listener
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    at work i am being accused of being lazy and a shirker because one hour i can work normal and then a hour later i feel so weak i cannot do my job and then later i may be able to work again its so weird. i have worked hard all my life and never been a shirker but am thinking of giving up my job as a result of this, but but have never claimed benefits in my life and dont know if i would be entitled to ?
  • nebulrwas
    nebulrwas Community member Posts: 11 Listener
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    although my doctor has diagnosed my myasthenia gravis and given me medication, i cannot seem to access any practical advise.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello there @nebulrwas and thanks for reaching out, I'm sorry to hear that you feel you are being accused of laziness at work. It can feel frustrating and upsetting when our lived experience is not believed and people go on to make assumptions. 

    Have you spoken to anyone at work about your diagnosis of myasthenia gravis? It might be helpful if you could have a chat about any reasonable adjustments your employers can make to help make working easier for you, or more flexible. 

    Under the Equality Act (2010) your employers have a duty to ensure they provide any reasonable adjustments for anyone who needs them.

    Can I ask who is saying that you're lazy and a shirker, and if this has been said in person or in writing?

    ACAS has advice on disability at work, including what steps to take if you feel you are being discriminated against because of your disability or health condition. 

    Living with a rare condition can be challenging at the best of times, especially if you've been recently diagnosed. One organisation that can help is main UK charity for people with myasthenia gravis and their families, Myaware.

    Myaware provides useful information and advice about living with myasthenia gravis. They also have a Facebook group and local support groups, so please do take a look if you feel this would help :)

    If there's anything I've missed or something else you'd like a hand with, just ask. 

    Alex

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  • durhamjaide2001
    durhamjaide2001 Community Co-Production Group, Scope Member Posts: 11,128 Disability Gamechanger
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    No I'm not but I'm interested in knowing what myasthenia gravis is?
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    @durhamjaide2001 Myaware's website has a section about different types of myasthenia which might help answer your question :) 
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  • nebulrwas
    nebulrwas Community member Posts: 11 Listener
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    hi alex, thanks for your reply its nice to know theres someone who cares and is taking an interest as this is a rare disease and i am feeling quite isolated. to answer your question i work with a group of contractors who were good to me at the start and helped me cover my illness from my employers. only now they realise i have this disease for the rest of my life and are not so keen. i dont blame them as my symptoms alter hour by hour or even minute by minute and it must be hard for them to understand i can be half normal one minute and then too weak to lift a tool a few minutes later.
  • nebulrwas
    nebulrwas Community member Posts: 11 Listener
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    hi Durhamjaide 200, 
    thanks for your interest. I dont know that much about Myasthenia Gravis myself, i was only diagnosed 4 months ago and the medication i am on is not working but the neurologist whom i saw said it will take a long time to find what medication works for each individual. he said he may see about one new patient every 5 years, thats how rare it is. apparently its when the nerves and mussels stop connecting and this stops mussels from working. with rest they will work again for a short time but not for long, some times its a struggle to lift my arms then minutes later i may not be able to lift my head because the mussels in my neck are so weak. because you need mussels to breath and swallow i sometimes have spells when this is difficult. i went to bed one night a hard working normal person and woke up with this horrible rare disease and its devastated me. apart from work i have not been out the house for four month because i just rest. i cannot make any plans because i dont know how weak i will feel one hour to the next.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    That's okay @nebulrwas and thank you for explaining everything in more detail, that's really helpful :)

    It can be scary telling an employer about our disability, as we might be worried about losing our job or being thought of or treated differently. Scope has some guidance about talking about disability at work, please do have a read.

    As I mentioned above, if an employer knows about your disability, they have a duty to make reasonable adjustments to support you in your role, and help everyone you work with to understand the impact of myasthenia gravis better. 

    Getting support is especially important if there's any health and safety risks around the work that you're doing, as you've mentioned lifting tools. Is it a very physical job?

    I'm glad to hear that you're being supported by a neurologist, hopefully you can work together to find medication which works for you. Have you spoken to them about the impact the diagnosis has had on your mental health?

    Perhaps this is something you could talk to your GP about, as a change mental health is a common reaction to any big change in life, and there is support out there for you.

    If we can help with anything else, please ask.
    Online Community Coordinator
    Scope

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  • nebulrwas
    nebulrwas Community member Posts: 11 Listener
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    hi alex
    thanks for your reply, the reason i have not told my employer is i am a contractor and i will proberbly be laid off however i think its now becoming obvious to everyone at work.
    i did not think of my diagnosis as a disability but as an illness i am not sure of the difference though i have been told there is no cure and i will have it for the rest of my life.
    as for my mental health as i said i have been a industrial contractor all my working life and am not supposed to show it although i have tears in my eyes as i am typing this.
    sorry for using up your valuable time telling you nothing constructive.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    You're certainly not using up my time @nebulrwas and it's really positive that you're able to use the community here to ask for help and support. It's not easy to do and takes a lot of courage, so well done. 

    It can be confusing when different words are used to define your myasthenia gravis, so let me see if I can help. Remember, not everyone with a health condition will choose to identify as disabled, so it's really your preference.

    In the Equality Act, a disability is: "if you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities"

    That's quite wordy, but what it means is a condition which makes an everyday task like getting dressed take longer or feel more tiring or painful, and which will last 12 months or longer. 

    It can be a lot harder to manage our emotions when we bottle them all up and push them down. It's hard to be open and talk about it, you might feel pressure to hide it, or not want to bother others. 

    You are worthy of support, and you are welcome to talk about things here. 

    If you'd like, you can read about talking therapy and counselling services the NHS can offer, your GP can refer you, or you can refer yourself for support.
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