6 Things not to say to someone with a chronic illness

1. "Have you tried eating meat?"

This was my partners Dad who struggles to comprehend how any meal can be complete without meat (imagine a thick Serbian accent but the kindest man you would ever meet). Although he was joking, I do think he secretly holds on to the belief that if I ate less carrots and more steak I would be better! I was also told by someone else that being vegan would cure me. I have been plant based for 2 years and I got Lupus so not holding out hope for that one.


2. "You should have more turmeric"

I think at the time turmeric must have been the 'in' food in Sydney as everyone was telling me to have it. Apparently I could stop my immune system from attacking my organs if I just had MORE of this -stains everything orange -powder. Insert apple cider vinegar, zinc, supplements, vitamins etc. I think I have been recommended & tried most things. They all have their place, but it won't cure me as much as I wish it did.

3. "Drink more water"

Apparently water washes away all your problems if you drink enough of it. Or maybe my organs just start to drown and then the Lupus bullies can not longer attack it. I am not sure on the exact science but if I drink any more water it might start leaking out of my pores. Water is great and I never go anywhere without my water bottle (thanks to dry mouth problems due to meds side effects) but I wish getting better was as easy as a few extra sips.



4. "Have you tried taking paracetamol?"

This particular one caused great upset whilst I was in a Sydney hospital. I was in agony (due to a bladder infection they didn't pick up) and lupus flare. I had taken Endone/oxycodone which wasn't covering it, so when the Doctor who came on duty the following morning was going to send me home with a paracetamol I was in disbelief. Annoyingly, she took my reaction to mean I didn't understand how paracetamol worked and proceeded to 'educate' me in great detail how I had to take it every 4 hours and could I count to 4.

5. "You've got to think positively"

A positive mindset can be powerful but that alone will not 'cure' me. I am a lover of quotes (as I am sure you would know from my Instagram) and I sometimes find comfort in words inspiring me that better days are ahead. However, no motivational quote can help me through a bladder instillation or stopped my constant nausea and vomiting which I had for months. I have been 'manifesting' that I want to be better for almost a year now, so here's hoping it kicks in soon...

6. "I think it's your medication making you worse"

I wasn't sitting there one day thinking, you know what my day needs, a good 20 minutes every morning and night taking over 20 different drugs as a new hobby, bonus if they give you fun side effects like weight gain, hair loss and nausea. And although Carlos (my pharmacist) and I are on first name basis I would love to not see him quite so often. The reason I take medication is based on myself working with my team of doctors to support my body by using the least medical intervention possible. I cannot wait for that number to decrease, but that decision will not be influenced by the non-medical opinion of someone who occasionally takes an ibuprofen.



All these were said by well-meaning kind friends, colleagues and Doctors. I know everyone says these things to help, as they like me, just want the illness to go.

We as a community, try our hardest to eat well, workout, follow doctors instructions and have a strict medication regime etc. We do everything within our power to support our bodies and we do not need extra 'guilt' from those around us. It's great to hear your friend's sister's auntie found Tumeric helped her disease that is nothing to do with mine, but please don't judge me if I don't follow your kind advice.

What are the best worst 'cures' people have given you?

Lots of love,

Zoe

xx

#chronicillness #invisibleilness #autoimmune #health #spoonie

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