This quote explains it all:
“There are lots of would-be censors out there, and although they may have different agendas, they all want basically the same thing: for you to see the world they see… or to at least shut up about what you do see that’s different. They are the agents of the status quo.”
There were times when I shared information that presented an alternative and sometimes, an opposite view of a group’s agenda, those information were censored.
Topics like moisturizer withdrawal were not accepted and were treated with scorn, in early ITSAN forums as well as some facebook groups whose admins widely promote their skincare products. The justifications for censorship often come in the narrative of “protecting the group” from the information I shared. I wonder if the censorship was done to “protect the group” or rather to “protect some authority’s interest”.
Recently, in my attempts to reach out to people with eczema and to share information on the dangers of topical steroids, many of them has lashed out at me for being steroid-phobic. Some told me to “keep my bigoted” comments to myself. I believe these people are the ones who are still heavily using topical steroids and choose to not see additional relevant information that could help them. If they took the time to look at the information presented here, they will realise that I’m highly neutral on the position of topical steroid usage.
In some ways, I’m astonished at the amount of hate directed to me. Besides, all I have done is to share information with my opinion. I’m not at all bothered in a single sense, just astonished, at the ways of firstly, how people can deliberately choose to ignore relevant information, and secondly (an even bigger problem), how people can censor information to prevent access of information to others.
Stephen King said it best. There is this group – the status-quo, and there is another group – the ones who have their voice, the ones who speak out and the ones who dares to make a difference. There is great comfort in fitting in with a group. Sheeps stick together in a herd to maximise their chances of living. However, that’s all they do – to live – an average life. And they want others to live the same average life as them.
However, the truth in the real world is that people who step out of the status-quo are the ones who make all the difference in the world. They are the ones who think differently, speak out with their inner voice, go against the establishment, think out of the box, envision possibilities. These are the groups of people who often face intense criticism for their work. Yet, the legacy they leave is ever more significant than what the status-quo can seek to achieve.
There are things that I’ll continue to do – sharing information. If you are threatened by my actions, it only tells me: you have something to protect, and it will serve you better to see the information gone or censored, rather than it be freely distributed. (Think Snowden and the US govt.) I’m heartened to know that some of my information has benefited others. That is all I needed to know to keep going and doing what I am doing.
Going through TSW forces you to think deeply what you want to do in your life. Do you want to be average? Or do you want to live a meaningful life by your own standards and leave a legacy you can be proud of?
I’d love to hear how TSW has changed your living philosophy. Share this post if you find it meaningful =)
Sharing this content on Karina Sandberg’s Ditch the Itch on her moisturizer withdrawal (MW) experience.
Tomorrow will mark 2 weeks of no moisturizer! When I went into it, there was no doubt in my mind that it was the right thing to do. It just makes sense that applying moisturizer will delay healing because 1 you’re weakening the skin barrier and 2 if you’re using over the counter lotions, you’re also adding a bunch of chemicals to your already unhealthy skin.
But a few days ago I wondered if maybe I was a rare case that would not benefit from “nomo”…I had the most intense pain in my worst area, my neck, for about 3 days. It was excruciating. I felt so low, I just wanted to give up and succumb to the desire to put some jojoba or coconut oil on my neck just so it would soften up a bit. I mean, how could it possibly heal if every time it dried out, I itched it right off?!
Well, I’m glad I didn’t!!! I realize now that I must have been flaring at the same time as stopping moisturizing. Last night was the first night in over a month that I slept the entire night. And without an itch attack!!! Hooray!!!
If you’re thinking about doing it or having a hard time as you do, please just give it some time. Last night could be a fluke so I will report tomorrow but it really seems as if my skin is stronger now. I’m really hoping that it just gets better from here! I know according to research that each subsequent flare during TSW is supposed to be not as bad as the prior one. For me, the second one was much worse than the first. Hopefully they get easier from here on out since I’ve stopped moisturizing.
I think, firstly, it is very brave of her to go through MW at the very early stages of her TSW. It takes plenty of courage and personal conviction in her logical understanding of the negative effects of moisturizing.
Secondly, she has reported same experiences as those who have went thru MW – an initial “hard” landing, followed by some good news, (as reader Teapot has updated her experience in the latest post titled 5 Mental Strategies to cope with TSW).
My personal experience tells me that this is still very early for Karina and I can predict that she will experience multiple cycles of -feeling good, then bad as she will scratch off the dried up skin, exposing her raw skin, followed by oozing, weeping, and then drying again. This cycle is important as it is all part and parcel of the recovery process. She will experience massive shedding at the start. Overtime, the cycle duration will shorten, and the shedding will decrease until there is little to none. Soon, she will get a handle of a “turn around time” of her cycles.
Understanding the “turn-around-time” (TAT) is an important factor in my recovery as it is some semblance of control, of knowing what will happen. I know after I scratched badly for 1 night, I will suffer for the next day, then on the 2nd day my skin will dry, on the 3rd day it will shed and I may scratch again.
Knowing provided me comfort. Information of my own body provided comfort. Predictability gave me comfort. I hope Karina manages to get through this phase and gain some predictability.
On another note, I have not posted month 5 pictures as the visual improvement was little. I’ll do it in April and show a 2 month difference. I consider myself more or less healed on the basis that I can function normally, while my skin is still not 100% perfect. I’m exercising alot to get those problematic skin areas to sweat – so that it can be inferred that blood is properly flowing thru those skin layers. Everything is good so far.
Here are two pictures of my “recovered” neck. I wished I had taken more pictures of my neck during its worse stages. The closest I can refer to compare them with Karina’s neck pictures. They were very similar during my worse tsw flares.
You can see the uneven pigmentation and some scars from the withdrawal. however it is pretty much smooth over the past 4 months and has remained as such. I attribute the improvement mainly to moisturizer withdrawal and exercise. MW simply removed alot of unnecessary irritation to my neck. I can make this statement conclusively because I could never get a handle of my neck and it was continuously flaring while I was constantly moisturizing it. So here it is.
Healing is achievable and possible with the cessation of topical steroids and moisturizers.
Topical steroid withdrawal is painful, miserable, tiring and depressing. You can’t control your what your skin does, but you can certainly control what your mind thinks. Here are 5 mental strategies to cope with your topical steroid withdrawal symptoms.
You become sad and disappointed when your expectations do not meet reality. Solution? See reality as it is and manage your expectations from there.
When you are having topical steroid withdrawal, you have to accept that your skin is going to look rotten. You will bleed. You will itch. You will scratch. You will ooze. You will be in constant pain. You will cry. Your skin will get worse, get better, get worse, get better and so on. And you will heal, in time.
You used topical steroids to give you a “free” ride early on in your life. Now that you have made the decision to undergo withdrawal, it is time to pay the price of the negative effects of topical steroids. Nut it up!
Upon understanding reality, stop being too harsh on yourself for damaging your skin. If you knew (about the dangers of TS), you wouldn’t be in this situation. Stop hating yourself for scratching, stop hating yourself for having bad skin, stop hating yourself for everything. If you are feeling down, don’t feel bad about feeling down.
Tell yourself it is okay. Give yourself time.
Tell yourself that pain is a price you will have to pay in order to get better. Every bout of scratching, itching, flaking and oozing eventually leads to a newer, stronger layer of skin. Develop a gritted determination to get through it by embracing pain. You can’t escape pain during Topical steroid withdrawal, so you might as well embrace it.
This is the most important strategy I used during withdrawal. It gave me everything I needed to know about my body self’s recovery ability, even in the most difficult withdrawal periods of my life. Tell yourself that if others did it, so can I. Make it better, tell yourself you can do it better than others. You will be going through this withdrawal with a zen disposition and a smile on your face.
First, set goals – Whenever I experience a negative thought, I want to be consciously aware of it. Start with this small goal. Being aware of what you are thinking is the first step. Exercise this mental muscle for a day, a week, or a month or so. When you are stronger mentally, start turning them into positive ones. For me, I just wanted to be a better version of myself compared to yesterday, i.e. walk a longer distance, write a little bit more, listen to nice music, reach out to more people, stop feeling miserable, complaining less. Focus on the good, less on the bad.
These are some strategies that I’ve used to cope. What about yours?
Statins have no side effects? This is what our study really found
Use of statins has always been a big controversy. Controversy aside, I think what is more interesting is the content on placebo and nocebo effect. Here are the relevant exerpts from the article:
Can a sugar pill have a side effect? Interestingly, a paper published in the journal Pain next month looks at just this issue. They found every single placebo-controlled trial ever conducted on a migraine drug, and looked at the side effects reported by the people in the control group, who received a dummy “placebo” sugar pill instead of the real drug. Not only were these side effects common, they were also similar to the side effects of whatever drug the patients thought they might be getting: patients getting placebo instead of anticonvulsants, for example, reported memory difficulties, sleepiness, and loss of appetite, while patients getting placebo instead of painkillers got digestive problems, which themselves are commonly caused by painkillers.
This is nothing new. A study in 2006 sat 75 people in front of a rotating drum to make them feel nauseous, and gave them a placebo sugar pill. 25 were told it was a drug that would make the nausea worse: their nausea was worse, and they also exhibited more gastrictachyarrhythmia, the abnormal stomach activity that frequentlyaccompanies nausea.
A paper in 2004 took 600 patients from three different specialist drug allergy clinics and gave them either the drug that was causing their adverse reactions, or a dummy pill with no ingredients: 27% of the patients experienced side effects such as itching, malaise and headache from the placebo dummy pill.
And a classic paper from 1987 looked at the impact of listing side effects on the form which patients sign to give consent to treatment. This was a large placebo-controlled trial comparing aspirin against placebo, conducted in three different centres. In two of them, the consent form contained a statement outlining various gastrointestinal side effects, and in these centres there was a sixfold increase in the number of people reporting such symptoms and dropping out of the trial, compared with the one centre that did not list such side effects in the form.
Now, this has real-world implications. If we tell people about side effects, and in doing so, we induce these unpleasant symptoms, then we are inflicting harm on our patients. Inflicting harm isn’t so unusual in medicine, in the process of doing good, but we aim to ensure that overall we do more good than harm, and in particular we aim to produce and share good quality information, so that patients can make informed decisions about the treatments they take.
With that in mind, we have a responsibility to try and establish good quality evidence on side effects, and in particular to nail down how far these side effects are genuinely being caused by the drugs. We certainly shouldn’t give false reassurance; but we also shouldn’t scare people into experiencing side effects; or scare them into avoiding a medication which might help them.
(Some people get a bit melodramatic about statins, as if they’re being forced down our throats: the evidence shows they reduce your risk a bit if you’re at high risk of a heart attack; they’re less helpful – but still a bit helpful – if you’re low risk; and if you decide you don’t want to take them, after being appraised of the evidence, well, that’s easy, don’t take them).
As I explain in Bad Pharma, we are generally pretty imperfect at monitoring side effects, partly because it’s a hard job to do, and partly because there’s still a lot of dismal secrecy around: the WHO Uppsala side effects monitoring centre withholding information from researchers is a particularly disappointing example of this, as is the European Medicines Agency’s silly and rather self-defeating secrecy around the content of full Risk Management Plans.
It is interesting to know that along with the well-researched placebo effect, the nocebo effect is also true in that if patients know the side effects of something, they tend to experience them as well.
Does this mean that if the side effects of topical steroids are very well documented, more people who use them will experience the side effects of TS? More than those who do not know about the side effects? This is the implication of the nocebo effect.
Nonetheless, the article points out to something that I believe is still very relevant and lacking in today’s medical industry – the understanding of drugs side effects. It is this “fat-tails” side effect that could result in devastating or critical illnesses, and TSA/TSW is one of them. While I’m not sure of the numbers, it could be that a large majority of population who uses TS are not addicted and do not suffer the same symptoms as us. But a small minority like us experiences the fat-tails end of low probability with disastrous effects.
More study in the area of topical steroid side effects is important, especially for patients with a long cumulative usage. Numbers, localised effects, short term data is not sufficient. We need research that dwells with the long term, with “long” time providing the true data.
“You’re looking for three things, generally, in a person. Intelligence, energy, and integrity. And if they don’t have the last one, don’t even bother with the first two.”