I don’t want to hear that Yoga or eating an avocado a day cured your friends Lupus. I don’t want to hear what vitamins to take, you are not my doctor and I will not listen to you. There is no tips that can ‘cure’ my Lupus.
Yes, I am bored of telling you what Lupus is. I’m not offended that you asked – I like that people ask so they can understand but I’m bored of telling you what it is when I’ve already told you countless times. I understand it’s complicated but I tell you what it is in the simplest way I can.
“My joints hurt too, especially after the gym” let me guess 2 paracetamol and an ibuprofen takes that pain right away? “I’m tired too” I’m also guessing a nap takes that tiredness away? Please don’t compare your minor ailments to me, they are fixable. If your well friend said “my joints hurt” you wouldn’t tell them “yeah well mine do too!” please don’t make me feel guilty for something beyond my control. Naps don’t take my tiredness away and I need prescription only painkillers for my joint pain.
“You sleep a lot” yes, I do. Thanks for noticing and making me feel lazy. I sleep a lot because I need to. I’m plagued by fatigue, it never goes away. I can sleep for days, no really I can, I’ve once slept for a record time of up to 17 hours…you know why? Because I physically couldn’t stay awake.
“Do you seriously need those all those tablets?” woah, can I see your medical degree? Of course I need them. I don’t take them for fun, they are essentially keeping me alive so I can be stood here telling you why I need them.
“Are you better now?” nope. I’m not better, next week I won’t be better, next month I won’t be better and next year I won’t be better. You know why? Lupus isn’t curable and I’ve told you that before. I’d rather you just ask me how I’m doing.
“I don’t want to complain to you, you have enough going on” just because I have Lupus doesn’t mean you can’t tell me about any issues you have going on. I will try my best to help you out, just like I used to do.
Please, treat me like you did before I got sick. That girl you knew, she’s still there. She still has the same likes and interests, you don’t need to walk on egg shells around me and you won’t hurt me if you touch me. The worst thing you can do is treat me differently, don’t treat me like the frail sick girl because I’m not. Please don’t assume I’m better because you’ve seen me laugh or smile, and don’t assume you know how I feel because I look perfectly well.
“What can I do to help you?” you can treat me exactly how you did before.