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i am sick and tired of living with lupus

hi
i have lupus - and i suffer with extreme tiredness from it
when i was younger it didnt affect me as much - but i have started to notice that as i get older i feel even more exhausted and demotivated with things
i just wish people knew about it - i have begged my mum to tell my school but she doesn't want to because she thinks it will be bad for my reputation and teachers will look down on me and her.
i dont know how to tell her that i am literally hanging on my a thread - i missed a lot of school in yr 12 last year because of depression (common side affect of lupus) - but i mean i should blame myself because i have always thought my tiredness and missing school is all my fault hence i didnt do much about it.
i dont know what to do - my mum thinks i am overexagerrating - that it isnt a big deal and i should just manage it
i dont know what to do at this point. my school is asking questions but how can i suddenly tell them this now when i have been hiding it for three years (when i was first diagnosed)
Hey sorry to hear about how things are for you, I definitely think you should talk to someone at the school, the teachers are there to support you, especially if you've got ones you trust. If not you might be able to talk to a school nurse or a counselor.

People shouldn't look down on you for a medical condition that cannot be helped, and you should NOT blame yourself as it is not your fault but you might be best going behind your mum's back to tell someone you trust at the school, that should be a lot of weight off your shoulders and the school might be able to get something in place for you to support you, including providing resources so you can continue studies at home when you can.

Hope my thoughts on the matter helped, and I hope that you feel better in yourself soon
Reply 2
Original post by InfurnoCrash
Hey sorry to hear about how things are for you, I definitely think you should talk to someone at the school, the teachers are there to support you, especially if you've got ones you trust. If not you might be able to talk to a school nurse or a counselor.

People shouldn't look down on you for a medical condition that cannot be helped, and you should NOT blame yourself as it is not your fault but you might be best going behind your mum's back to tell someone you trust at the school, that should be a lot of weight off your shoulders and the school might be able to get something in place for you to support you, including providing resources so you can continue studies at home when you can.

Hope my thoughts on the matter helped, and I hope that you feel better in yourself soon

thanks so much for your reply
yeah i feel like my mum is really toxic about these things - i just feel so awful about myself whenever i have to miss school because of fatigue when i shouldn't be because i can't help it!
i think ill start telling some teachers just so they are aware because it is just getting really burdening - especially cause i go to sixth form so they are super strict with these kinds of things.
i dont even think my mum understands how i feel at this point - she just brushes it off and doesn't care. its actually really frustrating and im just so lost as to what to do in terms of my relationship with her.
I'm sure your mum does care, but she doesn't know how to show it, it's very likely a (mostly) generational thing
But I definitely think you should talk to your teachers, if you can try and show or bring them a doctor's note that says your diagnosis as well

(I have Achilles Tendonitis which makes my Achilles tendon weaker than normal, it's genetic on my dad's side, and by having a doctor's note was able to get out of certain PE activities when I was having to take PE)

If it helps as well, maybe try talking with your mum about how it is frustrating you and how having to hide it is a burden for you because of how important attendance is.
Reply 4
Original post by InfurnoCrash
I'm sure your mum does care, but she doesn't know how to show it, it's very likely a (mostly) generational thing
But I definitely think you should talk to your teachers, if you can try and show or bring them a doctor's note that says your diagnosis as well

(I have Achilles Tendonitis which makes my Achilles tendon weaker than normal, it's genetic on my dad's side, and by having a doctor's note was able to get out of certain PE activities when I was having to take PE)

If it helps as well, maybe try talking with your mum about how it is frustrating you and how having to hide it is a burden for you because of how important attendance is.

hi there so sorry for the late reply
thanks so much! a small update i have spoken about it with teachers and they are being quite helpful. they are still adamant about attendance though but im learning to manage it a bit more and let myself take a morning or two off once in a while. stuff with my mum is still stagnant but i can't expect much it is probably like you said a generational issue.
Reply 5
Original post by angiemeza1234
hi
i have lupus - and i suffer with extreme tiredness from it
when i was younger it didnt affect me as much - but i have started to notice that as i get older i feel even more exhausted and demotivated with things
i just wish people knew about it - i have begged my mum to tell my school but she doesn't want to because she thinks it will be bad for my reputation and teachers will look down on me and her.
i dont know how to tell her that i am literally hanging on my a thread - i missed a lot of school in yr 12 last year because of depression (common side affect of lupus) - but i mean i should blame myself because i have always thought my tiredness and missing school is all my fault hence i didnt do much about it.
i dont know what to do - my mum thinks i am overexagerrating - that it isnt a big deal and i should just manage it
i dont know what to do at this point. my school is asking questions but how can i suddenly tell them this now when i have been hiding it for three years (when i was first diagnosed)

I love you
Original post by angiemeza1234
hi
i have lupus - and i suffer with extreme tiredness from it
when i was younger it didnt affect me as much - but i have started to notice that as i get older i feel even more exhausted and demotivated with things
i just wish people knew about it - i have begged my mum to tell my school but she doesn't want to because she thinks it will be bad for my reputation and teachers will look down on me and her.
i dont know how to tell her that i am literally hanging on my a thread - i missed a lot of school in yr 12 last year because of depression (common side affect of lupus) - but i mean i should blame myself because i have always thought my tiredness and missing school is all my fault hence i didnt do much about it.
i dont know what to do - my mum thinks i am overexagerrating - that it isnt a big deal and i should just manage it
i dont know what to do at this point. my school is asking questions but how can i suddenly tell them this now when i have been hiding it for three years (when i was first diagnosed)
Hi

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