Usually when people say stupid things to my mum and I, I politely make non-committal noises because I haven’t got the energy to correct them and I hate confrontation. However I wish I was more assertive like my mom who responses with the truth (often embarrassing me in the process), so I have wrote some of my responses here.
‘You look well!’ that would be the Nars concealer in Chantilly that I applied for this necessary trip to the opticians, because I look like death warmed-up without it.
‘I haven’t seen you for a while’ that is because I have been in bed or trying to study, so I pretty much haven’t left the house and you don’t live with me.
‘Everyone gets nervous’ or ‘you’ll be fine once you get there’ the anxiety side of my brain is telling me repeatedly that I’m going to die, so your reassurance is futile.
‘My friend was feeling tired for ages then she tried Aloe Vera juice and it did wonders, you should give it a try’ please please don’t try Aloe Vera juice: it tastes disgusting even with orange juice, it’s insanely expensive (at holland & barratt it’s £1.43/100ml whereas Canti Prosecco is £1.33/100ml at tesco) and it definitely doesn’t make you feel any better, if anything it makes you feel more nausea.
‘A holiday would do you the world of good, the warmth from the sun would be great for your joint pain’ there is no such thing as a holiday from ill-health, travelling is incredibly tiring generally never mind with a chronic illness. Plus I can’t stand bright lights because it gives me terrible headaches so how is being in the sun going to help?
‘So do you just claim dole then?’ No, if you are referring to jobseeker’s allowance as you have to be able to work to claim that. Plus my finances are nobodies business but my own.
‘So does drinking lots of Red Bull help you feel less tired?’ No because Caffeine affects the bodies adrenal glands causing an increase in cortisol which worsens my fatigue. https://cfshealth.com/3-reasons-to-avoid-caffeine-during-your-cfs-recovery/
‘It would be great if you could have a cafe of your own, because your great at baking, your mince pies were amazing at christmas’
Yes I can make a mean chocolate cake and good mince pies at christmas but there is no way on earth I would be able to run a business and stand on my feet all day. Plus where exactly am I going to get the money from to start my own cafe?!?
‘Your so lucky! Getting to spend all day in bed, I’m died jealous’ Spending all day in bed is not a privilege if it is a necessity, I am better of then some but I am not lucky with regards to my health.
‘You know what you need, a job in the public sector such as the NHS because they were great when my friend developed depression’ the key word there is “developed” you have to initally be well enough to complete a job in the NHS, also what exactly would I do? because I am not trained in anything.
‘Your so negative, you need to think positively or you’ll never get any better’ I am not negative, I simply prefer to have realistic expectations about my ability due to my health. Plus this comment makes it sound like you don’t believe that myalgic encephalomyelitis is a real physical condition, which it is. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
What silly things do people/ family say to you? How do you respond?