Stop telling me how to get well

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.

5 Replies to “Stop telling me how to get well”

  1. Anthea

    So very true, and experienced all along the spectrum of illness. From a sore throat “honey! Lemon! Whiskey! Ginger!” (All things I happen to agree on) to depression “go for a walk! Get out more! Eat properly! Sleep less!” And beyond.
    How do you handle those intrusions? What should we encourage people to do instead if they really are well meaning? (Other than stfu)

    1. writehandedgirl Post author

      Hmm, those are good questions. I did write a post a while ago of “Things you can do to help” – because, ultimately, that’s what they’re trying to do, I guess. Lighten the burden of illness. Sometimes I have the energy to engage with people, to explain to them that I am already doing what I can. Other times I just nod or don’t reply. Honestly – things like: giving me a ride somewhere, or making me a meal, or sending me a card all help me so much more than suggesting I go on a fricking keto diet.

  2. ptoothfish

    Such a bitter irony that antinuclear antibodies *sounds* like something that should instead confer superhuman powers…

    You should carry two canes, one is for walking and the other is for hitting people who ask stupid questions. You can probably get a cane that does both from a specialty store.

    Thanks (in general) for your open and creative postings. I rarely don’t learn something.

  3. Liz

    I’m one of those people who never comments on things but I had to on this. I just found your blog/Twitter today – I’m 27, have severe reactive arthritis and sometimes am very visibly struggling to get around.

    I was walking down the street today mulling this exact thing – it’s like you lose the choice to ask. It’s meant kind and to be helpful but visible illness somehow makes you open for unsolicited comments or advice that you would not ever be given otherwise. It’s not that I’m choosing to be McLimpy. I’m trying my damnedest to resolve it the best way I know how and I have to trust that the medical professionals helping me are already giving me the best advice possible.

    And if I have one more person helpfully tell me that I’m too young to have arthritis…

    That’s not to say I don’t appreciate the help and support I get from people, including wonderful friends – but I’d like a choice about it.

  4. David Peterson

    Got to agree with you Sarah about the “bad skin”! Appearances, such as skin, are a *lot* lower down in importance than being healthy enough to move freely again without pain! In my darkest days I’d have happily swapped bad skin for the rest of my life in exchange for being able to run again.

    Thankfully I haven’t needed to do that! For myself, I found switching to a *strict* low carb, high fat diet (those I think your “high protein salad made with lots of nuts and seeds” sounds like a fantastic meal! 😀 ) did absolute wonders for fixing up my ankylosing spondylitis. Am pain free and drug free now! 😀

    But everybody is different, and they need to research for themselves what will work for them (which sounds like exactly what you’re doing for yourself).

    The people probably mean well in offering advice, and on each individual case of “help” being offered, it isn’t so bad. But… what they don’t realise is just how often we get given “advice” by people! (especially if you’re very bravely public with your illness and don’t keep it a bit more private like I do. I can only imagine how many many more times you’ll hear well meaning “advice” from people!!)

    So by the 10,000th time you’ve heard it…. it could get on a person’s nerves! But they don’t/can’t see it from that side of the person receiving the “advice”.


Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.