My Mother’s Lupus Diagnosis

[bobbyedmo]

My Mum has been diagnosed. I live so far and she is alone. Sometimes she can barely move. Surgery is so far away, and she needs to work to pay rent. Does anyone have experience with this? Im terrified and not sure what to do.

[PMRpro]

Your mum has a serious systemic illness - and she needs to be able to rest, even if it means going off work sick.

Where are you - or rather, your mum?

[bobbyedmo in reply to PMRpro]

She works in Castle Cary - Somerset. She works as a carer on a contract basis. I wish she could stop working but if she does then she may not have money for rent. We don’t know how long it will be until she has her knee replaced, but she’s trying to save money to cover her rent.

[Paul_Howard Partner LUPUS UK]

Hi bobbyedmo ,

Has your mum been started on any treatment for her lupus to help alleviate some of her symptoms?

Is her employer aware of her diagnosis and making any adjustments to help her manage better in her role? We have a couple of employment guides which may be helpful. You can read/download the digital copies at lupusuk.org.uk/working-with...

[bobbyedmo in reply to Paul_Howard]

Thankyou Paul - her employer doesn’t know. She’s scared that she’ll lose her job

[Paul_Howard Partner LUPUS UK in reply to bobbyedmo]

I appreciate that is a big concern. She is protected by the Equality Act 2010 so it would be an illegal act of disability discrimination to terminate her employment as a result of her diagnosis. You can find more information and advice about disclosing one's lupus to their employer in the guides I gave you the link for. It is generally recommended to tell employers in order to ensure protection from the Equality Act and access additional support to help maintain work, rather than struggling on.

[johare]

Hi, this is difficult position for all concerned. You live independent lives and a diagnosis like this can change everything. Your Mum has a job that is physically and mentally challenging and that she probably loves. As Paul said, it is best for her employers to know of her diagnosis and to be given the chance to support her. There may be small changes to her working environment that could make a big difference to her day.

If your Mum is concerned she could join a union to gain advice. Speak to her GP or consultant about changes required. Occupational health nurses could offer support. There is a lot of support on this site.

Most of all don't feel guilty, a phone call will be support for your Mum. Let her off load. All the best and keep us informed.x

[Donnygirl]

afternoon bobbyedmo. i understand how your mum feels just let her know she would be surprised by letting her employer know about her illness. my manager was a cruel lady but then the higher managememt took me away from her and i am looked after and given every respect. i suffer with lupus sle fibromylgia damage to my spine liver and kidneys. some days i go home from work and go straight to bed. i live alone and am now struggling with normal daily life but just made a claim to pip so that i can afford to go swimming and to pay for a cleaner not because im lazy but because my body is tired but i cant afford to finish work. dont beat yourself up she is an independant lady just remember to call her often and listen to her x