Coconut water, oxygen chambers, rescue remedy, aquajogging, Vitamins A, B, K, and Zinc, more sleep, less sleep, kefir, raw food, cultured food, super greens, no greens, all greens.
You name it and I’ve been told it will cure my illness.
Chlorophyll, unpasteurised milk, colloidal silver, red foods, fresh fruit, no fruit, more exercise, bed rest. The list goes on.
The funny thing about being ill is that everyone wants to fix you. Suddenly, everyone – even strangers (especially strangers) – have great ideas about what’s wrong, and what will “cure” you.
Here’s the reality. Because my immune system got compromised, I have antinuclear antibodies. These antibodies make mistakes, seeing normal proteins as threats and attacking them. This causes inflammation and often results in autoimmune illnesses like Crohn’s Disease and Lupus.
I’m not a doctor, but I understand that this means my cells are not functioning the way they’re supposed to. I see several specialists, as well as my GP, and a dietician at Nelson hospital. I research everything exhaustively, I take all my medication, I follow the careful diet I’ve been given.
I do all of this while living within the restrictions of my illness – pain, exhaustion, and limited financial means. And even though I do all of this – I am not going to cure myself. I am going to be able to manage my symptoms. But there is no miracle answer. So it’s no wonder I get upset every time an unqualified stranger helpfully offers me another expensive, exhausting “cure.”
It’s also incredibly patronising. It assumes that I haven’t done my own research. That I don’t ask my doctors questions. You may as well tell me that I’m not trying hard enough to get well.
Last night, I happily – and a little smugly – tweeted about my meal, a high protein salad made with lots of nuts and seeds. Someone replied that I “should be very careful about what I’m eating, because it might give me bad skin.”
Hello, kind stranger! It’s really nice that you care about my appearance. It’s really nice that you think I’m not an adult who can manage my own diet. It’s also really nice that you’ve assumed that I care about your opinion of my face.
Frankly, I’m a lot more worried about getting sufficient nutrition right now than a little bit of acne. A trip to the hospital will do that to you.
I find it interesting how much my body has become a thing for public comment since I got ill. It’s nothing new that people feel entitled to talk about – and govern – women’s bodies. In extreme cases this results in things like abortion being illegal in New Zealand and autonomy being removed from people with disabilities. In my case it means I field continuous suggestions about how I treat my sick body, and how I should publicly present it.
This includes expecting me to take good care of my skin, hair, and weight, while trying to maintain adequate nutrition and just generally survive with illness. I’m still expected to meet social expectations of feminine beauty, regardless of what’s going on for me.
I’ve mentioned before that I use a cane. I don’t absolutely need it to get around, but it makes things a lot easier. Some people seem to be pretty offended by the sight of a young woman with a walking stick.
A shop assistant asked me if it was “necessary or aesthetic.” I only wish it were a fashion accessory! A woman stopped me in the street and demanded to know why I was using it when I didn’t look like I needed one.
It took me quite a while to accept the label “disabled.” My understanding of the term has evolved. Now I understand that it means the world I live in is designed for “able-bodied” people, which means sometimes it makes my life more difficult.
I probably sound very ungrateful. I know that the people who make these suggestions want to help, and I appreciate those who reach out to me. But, trust me – if it really is going to make me better, I’m already doing it. And if I’m not, I trust my doctors to tell me.
This may come as a surprise to but: I actually want to get well. Just please let me do that.