As I sit here taking my weekly chemotherapy, I have just finished reading an article by Chanel White Dear Person Giving Me Unsolicited Medical Advice. Chanel has previously written an article raising awareness of the many autoimmune illnesses which are treated with chemotherapy. She initially wrote this article because she was fed up of people telling her she didn’t need it or that it couldn’t possibly be proper chemo because she didn’t have cancer! Chanel has Systemic Scleroderma, a rare terminal autoimmune disease.
From my experience, advice seems to generally come from one of two camps; the informed and the ignorant. Don’t get me wrong much of the advice from both camps comes from a kind and loving place from those who have genuine concern over our wellbeing which we appreciate greatly, however we also all too often get the egotistical preacher.
Chanel’s article reflects the plethora of ignorant ‘advice’ I and my friends with autoimmune illnesses have had over the years from ‘helpful’ individuals. Usually individuals who know nothing about how chemo works or the illnesses it is used to treat but still feel they have a right to comment on it. ‘It will kill your immune system’ or ‘change your diet’ or ‘eat an apple instead’ 🍏 ok maybe not quite that one. Well, it doesn’t completely kill our immune system because if it did, we would literally drop dead if we left our front door, however yes it does suppress our immune system significantly. So we are at risk of getting seriously ill if we are around anyone who has a simple cold, infection or who has had vaccinations. Babies as cute as they are, can be our biggest threat! Yes babies – the mini terrorist to the chronic illness! Put simply, our immune systems need to be suppressed because that is the very thing which is trying to kill us – helpful individual, you would know this if you bothered to research our illness before telling us how to cure it.
Careful giving unsolicited advice on what is effectively a time bomb. As you stand there preaching advice you found on a Facebook meme, our autoimmune illnesses are progressing. It is a huge responsibility to come off prescribed medication and would take a weaning off period with medical support for us to be safe. Coming off any chemotherapy or biologic drug holds high risk as the illness continues to progress whilst trying said new diet/ juice/ program. If said trial is not successful there is no recovery of that damage, it is irreversible. And that is why we hold your suggestion of coming off chemo as irresponsible. You are literally messing with our lives. Funnily enough I don’t get this kind of advice when I mention my biologic drug which is far more potent and complex than chemo…but then again, I guess that would take actual research on your part. Chemo seems to be a buzz word that everybody knows but not everybody knows what it means 🤔
Furthermore we are probably already on that diet and were ‘eating clean’ long before eating clean was a ‘thing’. Personally I was brought up on a diet spanning meat, fish and many types of vegetables – not just the limited variety Tesco want us to think exists. I was not brought up on the sugar filled, nutrient dead, white bread you would like to believe. So the suggestion that autoimmune illness is purely a result of diet is patronising, offensive and shows a lack of education. If diet was the only contributing factor to health I would be a bloody athlete but I’m not, instead I have debilitating Rheumatoid Arthritis and a handful of other autoimmune illnesses. I am like Wonder Woman without the sex appeal and instead of fighting baddies I am fighting my own body. Ok I can be quite sexy sometimes.
Now don’t get me wrong of course diet affects health. We are a generation who have inherited supermarkets full of products high in sugar, salt, processed fats, additives and weird diet foods, although recent years has seen a split in trend as eating clean and whole foods makes a comeback with people cooking from scratch again. People are looking to a healthier way of life but just don’t be ignorant enough to think sick people are not one of those people too.
When you say these things what we hear is: ‘you have caused your own illness, why don’t you just fix yourself?’ Don’t try to put pigeon hole us to suit your own confusion. Don’t assume if somebody is sick or disabled then they must spend their lives sitting on a sofa in faded terry towel tracksuits, watching Coronation Street, ordering pizza with one hand and stuffing handfuls of Maltesers in their mouths with the other. In fact I have never worn a terry towel tracksuit in my life.
I know you feel you are helping us but it’s coming across as if you feel we are inferior to you and you need to save us like the missionaries ‘saved’ native people’s around the world. However much like the missionaries your approach shows a lack of empathy or indeed intelligence and seems to soley exist to validate your ego.
Now we are not beyond receiving advice at all. In fact I tried the Paleo diet on informed advice from friends who had a friend with an autoimmune illness it helped greatly. I was very touched that they shared the information with me and it was very much offered in as informed a way as possible. They advised me on literature around the subject and of course the difference it had made to their close friend. They offered me all this without a side dish of arrogance. Being in between biologic treatments at the time (still on chemo throughout though) I felt it was the perfect opportunity to see if Paleo made a difference with the most important variable out of play. I thought it was improving my RA at one point but it turned out that effect was probably left over from my last biologic treatment as I soon deteriorated again.
However, that said, I feel cutting out wheat has made some difference to my general wellbeing. Also much of the diet included things I was already doing such as limiting the nightshade family, as years ago I learnt these fruits or vegetables directly aggravate my other autoimmune conditions, I also cut down additives, sugar and dairy – all highly acidic foods. The age old theory of looking after your gut definitely makes sense to me. But alas all this being said it was not enough as the RA took hold again. Those who know me or have been subjected to my foodie photos on Instagram know I love food but it is not the solitary answer to my health. My hospital recently applied for and received funding for a new biologic for me (biologic drugs are not prescribed, they are obtained through hospital applications for funding from NICE). I will add the treatment to my existing medications including the chemo.
Now I am not naive to the fact that many of the western drugs are propelled by wealthy big pharmaceutical companies. But the truth of the matter is that chemotherapy and biological drugs have saved my life, if it were not for these treatments I would most likely have been dead years ago as RA attacks everything in the body bar none. We do not take these drugs lightly, the side effects are appalling and right now I am feeling saturated by nausea from the chemo I’ve just taken. And the long term side effects from biologic drugs are as yet unknown.
But as I explained above, ill-advising someone to come off their medications can be detrimental to their health, chronic autoimmune illnesses are aggressive if left untreated. We are also doing everything we can to ‘help ourselves’, just because we take chemotherapy does not mean we are not exploring other avenues alongside. It doesn’t have to be a choice between chemo and quinoa, you can have both (side note: quinoa is from the Andes and is thus pronounced kee-noo-ah please say it correctly if you wish to preach about it 😉).
We spend 24 hours a day 7 days a week working our arses off on this, we do not have the option to be lazy. No doubt I can do even more diet wise – who couldn’t? But I’m still doing better in that department than a lot people, including you, helpful individual who probably doesn’t know your cavolo nero from your elbow.
Don’t assume that because we are still ill we must not be trying hard enough, and instead assume that you have these views because you are privileged enough to have been born into a body that cooperates with you, rather than it being your greatest enemy. Instead maybe ask yourself why people with chronic illnesses make you feel uncomfortable in this world of perfection?
Still, at least you didn’t offer to pray for me which is the other ‘helpful’ statement we just love to hear! 🙏
With the availability of information on just about anything via google, It is becoming more difficult to filter through good, informed advice and bad advice. Everyone becomes an expert and it is probably frustrating. I admire that you are using this platform to raise awareness on autoimmune diseases. I have nominated you for a blogger recognition award and included a link to your page as one of my favourites https://charoflondon.com/2016/07/07/blogger-recognition-award/ . looking forward to seeing more
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Thanks charoflondon I am really flattered and appreciate the nomination! Having not been blogging for long and always feeing guilty because my health doesn’t always allow me to write as often as I would like, it’s nice to have a little recognition! 😊
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You’re welcome and do keep it up!
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