I’d like to highlight Juliana’s latest post as a great example of a vet with an intellectual curiosity to understand her disease, post healing. Besides the great content, I have tremendous amount of respect and admiration for people who have an innate capability of self-reflection, curiosity and intellectual rationalization.
I also respect people who take the right approach in combating TSW, the prime example is Tracy Scarpulla’s blog on her Topical Steroid Withdrawal Process . Her experimentation and documentation for the supplement she takes, as well as the strong justifications for taking them, make good reading. She is, what I call, a practitioner, someone who does things, experience things themselves, draw useful conclusions for themselves, and their lives are better off because of it.
There is, however, a group of ppl (especially some veterans in the TSW community), whom I absolutely have zero respect for. First, by virtue they have healed, they believe that their experience gives them a certain authority to dictate things: things like what type of information should be shared, what type of moisturizers you should use, what type of supplements you should take, what type of stuff you should use and etc.
Second, they are not open to critical assessment of their experience, instead of asking relevant and critical questions of their healing process (like what Juliana did), they hole into a comfortable shell of “been there, done that” and “my opinion matters more” kind of attitude. Just because you take 3 years to heal doesn’t mean others need to take as long as you do. Just because you experience secondary flares doesn’t mean others would to. Just because some people heal faster doesn’t give you the right to say his or her opinions doesn’t matter.
I don’t really blame this group of people, because in real life, we will often see these type of people quite often. People who are just average, incapable of logic and reasoning, incapable of self-reflection, incapable of higher-order thinking. And these people deserve to lead an ordinary life.
The worse thing that could happen in such situation, is for these group of people to be put in a position where they can influence masses. When you let monkeys lead, expect monkey results. The quality of an organisation depends on the quality of the leaders.
When I posted a critical post on Evaluating Advice, I’ve got people asking me: “Why am I so angry?” Let me give a critical and non-emotional answer.
I’m angry because I’m a victim, first of Doctor’s iatrogenic advice, second of the many products I’ve spent and wasted my money on: TCM, creams, moisturizers, more doctors visits, TS etc.
I’m angry because I see people giving poor advice, advice that either could potentially cause harm to others, or advice that is just a waste of money.
Now, there is a distinction between these people giving advice. First, there is a group of people who give such advice because they sincerely think that their advice is good (but in reality bad). An example, my gf and all skin doctors who constantly advised me to moisturize, which did not help my skin at all. Now, I can’t blame this group because they didn’t know better, so all I can do is to share my experience and educate.
The second group deserve to be hanged on a stake. This is a group of people, whom despite being aware of the potential harm of their advice, continue to keep advising people to do harmful things. This is the group of people who limit certain information to others in order to protect their self interests. This is the group of people whom I’m angry about. This is the group of people, whom despite of anecdoctal and scientific evidence, fail to acknowledge them and continue to live in their own world. Yes, doctors, you, and some TSW Vets with your holier than thou “I’m always right” attitude.
There is nothing you or I can do to these people, except to engage in meaningful logical debate and hope something meaningful hits them to wake them up.
I just want everyone to know, NO ONE HAS YOUR BEST INTEREST IN YOUR SKIN, except yourself. If you continue to take advice blindly, you deserve whatever outcome you deserve.
And this sums up the core of this post: be open (to knowledge), reflect, experiment, and take the best decisions.
P.S. I hope these senseless vets have some modicum of conscience and morals to allow them to sleep peacefully at night. When you do/advice/limit information or say things that could potentially harm others, you deserve no sympathy. I won’t hesitate to be blunt towards these group of people, because they don’t deserve any form of respect. We have a moral obligatory to “do no harm”, remember that deeply.