14 November 2016

Ichthyosis and medical shaming.

I've seen body shaming, food shaming and now medical shaming - where people are made to feel guilty or fearful for their medical treatment choices. It is also where people are recommended non prescribed treatments from the unqualified. It fits into the category of unsolicited advice, doesn’t it? The most amusing is when people tell me petroleum based products will kill me - while they’re smoking a cigarette.

I use a mix of paraffin - which are petroleum products. I try to avoid harsh chemicals like sodium laurel sulphate where I can - not because of poison but because they feel better on my skin and hair. And occasionally I have bleach baths. That’s right. Bleach baths. The bleach is very diluted - half a cup to a full bath. These baths help with infection. And people are aghast. Sales people are pitching their bleach-alternatives. What a moneymaker.

A few years ago, I was washing my lunch dishes in the tearoom at work. A colleague I’ve known for years was staring at me and I asked them what was wrong. They told me that she cannot bear the thought of me using petroleum products, and they wished that I didn’t have to use them. I thanked them for their concern, explaining that I have tried a range of medically certified and natural based products and paraffin works the best for me. They went on, saying there must be something else. I explained to them that without the level of moisture paraffin provides, my skin would be very sore - cracked and prone to infections and my movement would be restricted. I later heard she couldn't bear to touch things after I had. We’ve not spoken much since.

Rosalind Robertson writes about the pesky, unqualified people who tell us to stop taking our prescribed meds. She gives some great advice: "If the person telling you to stop them isn’t your doctor, tell them to fuck off." I've been too polite all these years.

Medical shaming feels harder when it come from within your own community. And it concerns me when much of this medical shaming comes from people relatively new to Ichthyosis. Newish parents. New spouses, hoping to cure their partner, because love. Many have no scientific knowledge or qualifications - jumping on science cosmetic and sales jargon, making unfounded claims about products' success.

A year ago, I came into contact with a woman spruiking some ‘natural skincare products over medically prescribed ones. She stated that the products for treating Ichthyosis have not been formulated for a market yet. She claimed that petroleum was dirty, and banned in some countries. She also claimed it was cancer causing. I told her she was putting guilt and fear into the patients and parents who choose to use petroleum based products.

I was also contacted by a woman who told new parents their babies' Ichthyosis was caused by "unclean" Europeans who ate dirty meat and were involved in the sex industry in the 1500s-1700s. Talk about fear mongering
Recently I was accosted by a sales woman, "accidentally" trying to sell me an expensive bath product (an actual bath) when I said I've been so unwell with skin pain. She subtly left a link to the product on my Facebook status. I told her while I appreciate she cares, I felt she was being opportunistic. We aren't friends anymore.

There's nothing like opportunistic pyramid sellers providing false hope to people with skin conditions by spruiking their "miracle cures".

And these people doing the medical shaming aren't medically qualified. They might have been to The Beauty School, or a pyramid selling course. They might even dabble in making herbal creams for their partner's skin. But they haven't done 18 years at university to become a dermatologist. And so few of them actually live with the condition. Sadly, they're pitching their products by making people (mostly parents) feel bad about using prescribed products - scaring them with unfounded scientific claims. And laughably, they suggest products that cost thousands of dollars above basic treatments for underprivileged families.

I trust my dermatologists with my life. I’ve asked them several times what the long term impacts of using paraffin is. They told me it’s a very low risk of getting sick from it. I’ve been using this ointment since I was about 10 - so 24 years - and it works fine. It’s the best moisturiser I have. It saves my life.

I will never take an unknown trestment from an unknown person. Here's why.

About 10 years ago, a pharmacist - who I trust - recommended me a treatment for sore ears after a flight. It was an antihistamine. I hadn't used it before but I heard it helped. My skin peeled off my hands and feet. I couldn't walk. I couldn't touch things or use my hands. I was off work for a week. I cannot risk a reaction like this again. If this is the reaction I get from a tested, regulated product from a qualified specialist, I shudder to think what might happen from an untested, unregulated one.

Consider these things before you medical shame:

  • There are many forms and severities of ichthyosis.
  • Treatment types and treatment success varies between patients. A single product might work wonders for me, but make my friend with Ichthyosis very unwell.
  • No one knows their body and treatment like the patient.
  • With grief comes desperation. Some parents are so desperate to find treatment for their children that advice like I've mentioned scares them into thinking they aren't doing a good enough job using prescribed products.
  • Many of these recommended products are unaffordable, not covered on pharmaceutical or medical assistance schemes. (A couple of parents told me they can't afford the alternative treatments due to this.)
  • Please don't think that patients, especially adults, haven't tried many different treatments already, and aren't happy with the one they're using.
  • Just because skin "looks good" with a certain treatment doesn't mean it feels good. Ichthyosis is not solely a cosmetic condition.
  • While natural products might work well for some patients, they might not work well for others. It's fine to use natural products - but understand they might not work for everyone. Just as prescribed medical products might not work for everyone.
  • Some of the products being suggested haven't even been formulated for market yet.
  • Just like I don’t want to be told that my food is ‘dirty’, I don’t want to be told by someone other than a doctor (and a specialist at that) that the medical products I use are harming me.

Please consider the impact of providing "research" and "facts" about alternative treatment products, especially when the products we are using are keeping us alive. People tell me petroleum based ointments will kill me, but they don't consider that me not using them will do more damage while I'm alive. The risk of me dying through any means - including cancer - is low.

Just as you ask me to respect your religion, please respect my medical choices. This sort of advice, fear mongering and guilting is not compassionate. It is divisive and dangerous. It's bullying. I worry about the impact it will have on new parents looking for information. I won't tolerate medical shaming from a well meaning, yet unqualified and opportunistic stranger.

(Image description: flowers, herbs and pills. Text: 'Medicine shaming, plus my blog link.)

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  1. I know im a bad mom for using prescription ointments on my son instead of letting him suffer in pain n uncontrollable itching 😕 I think its great that we can share stories, idea n suggestions with each other but I hate people telling me that their routines wld be better than our routine. While I wish we cold go all natural, I will stick to what I know works for him even if it is Dr. Prescribed. I love ur posts Carly!

  2. The worst I've encountered was a spouse of a man with Ichthyosis. I tried to tell her as politely as I could that I have my own treatment, yet she pushed and pushed this natural cream. I gave her the example of the pharmacist giving me something that caused an awful reaction. Then she told me how rude and ungrateful I was.

  3. I have been told to drink horsemilk. I had a cherry diet. Some alternative doctor made homeopatic medicins with sheds of my skin. The one thing that works for me is a batha with dead sea salt. Antibiotics. Steroid cream in a low dose. Avoid chocolate and most painkillers. Not an every day shower. Eat just a little sugar. Lots of sleep.

  4. Parents have enough worry without this. I agree so wholeheartedly! Fear monger tactics are horrible.

  5. I never thought of this term before but I am all too familiar with the concept. Drives me nuts!! :-(

  6. A friend of mine owns a fancy, boutique skincare company that is quite prominent and well renowned. But just because it works for me, I don't go running around telling everybody with a skin condition that it can work for them as well. I think for people who are new to the illness fall for the false promises of charlatans, rather than the more difficult reality from fellow travellers. And it is precisely that which causes people to hold on to false hope for so long, where unscrupulous people can see that vulnerability in a play on it to make money. I honestly cannot count the amount of times people have told me about cures that simply won't work, and when I point out that it would not work with me the standard response is "gee I was only trying to help."

  7. In other words, awesome post. Always able to put into words things my brain is still processing.

  8. I've just started researcheng hEDS which is a defective collagen condition that I believe affects some in our family. It explains why we have intolerances including to many medications, even those prescribed by medical authorities. I think all people, unfortunately also those in the medical community, need to understand the differences that seperate people may not necessarily be obvious. They may even be molecular. What works for one - emotionally, physically or mentally - may be totally wrong for another persons body. So if we share our successful methods we also need to accept that these methods have a good chance of not working for others.

    1. I have hEDS too and so many people try to "cure" me with collagen supplements.... Nope, it doesn't work that way, and I'm probably allergic to your supplements anyway thanks to the systemic mastocytosis that so often goes with hEDS.

      Well said, Carly, we should be able to depend on others in the rare disease community to support our making informed choices for ourselves, without subjecting us to drama.

  9. LOVE your blog! I was once told by a priest, my praying was faulty, and that I should pray better to god to make me taller. How does one politely tell a priest to take his rosary and... I'll stop there.

  10. Ah yes the holier than thou who insist on trying to force their ideas on you. As if we don't have enough to contend with. I once had to endure a reiki session (it was free! but never again) at which the practitioner kept going on about "western chemicals" as though they were dog excrement when he discovered I was on insulin. Insulin's been the only thing keeping me alive since I was a baby, don't make out I should be ashamed to rely on it as though I haven't tried hard enough with "natural" therapies.

  11. THANK YOU. Even on the ichthyosis facebook page people keep telling me all the natural crap I should be doing when I specifically asked about prescriptions.


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