This post will explain to you why information is power when we manage our TSW symptoms.
Information is Power: discussion boards/support groups that facilitate open discussions and flow of information
I have been to many different online support groups, forums, facebook groups and personally observed this general trend:
In groups that facilitate and welcome open discussion and sharing of experiences, the quality and hence power of information is greater, and thereafter, the quality of improvement in terms of the members TSW skin condition is also significantly better.
In a particular group where “Moisturizer Withdrawal” is openly discussed and practiced among the members, I often see:
- People who have not heard about it, but are excited about this technique that could benefit (and indeed benefited so many) themselves
- People sharing their MW experiences, through pictures, with great improvement
- People sharing that they could not believe they could be “dependent” or “addicted” to moisturizers, and they thought they would never live a day without them.
- People who are curious and open to engage and learn new stuff
- People who experimented with the idea and came back with great enthusiasm, that they finally got a better handle of their skin
I personally felt so happy for those who have tried this technique, which brought them so much relief and hope. But this could not have happened if the infrastructure or the people who managed them failed to provide an open space for people to engage and discuss matters candidly and openly, without any fear of censorship (for whatever intent, support or whatever crap justifications).
The opposite is true, the lack of “power” and quality of information is apparent in some boards.
In another separate group that I was previously in, the administrators had a vested interest in their own group. The admin owned a shop that sold moisturizing products, as well as endorsing some questionable “homemade” natural creams that from my experience as a quality and chemical engineer, had severe quality assurance issues.
Topics like moisturizer withdrawal was frowned upon and looked upon in distaste by the admins. I was given the justification that “members should not go to someone else’s house to criticize their furniture” Just like I should not share details on moisturizer withdrawal because the admin’s sell and push their moisturizing products actively to their members. That’s low EQ, they say.
And this is what I see in their forums:
- People constantly asking for help on their poor skin conditions despite the constant usage of their products
- Lack of quality / power of the information and discussions taken in their forums
- Relatively fewer good news, and more bad news
- People who are cut off from information that HAS benefited plenty of people in another group.
- People who are afraid to voice out things who are wrong because they want to belong and just lurk.
- People who are exposed to substandard information that has substandard effects on their quality of life.
And this is not limited to just this support group. I have been to Eczema support groups where there are people who are inherently objected to the concept of topical steroid addiction, and want to do absolutely nothing at all with the idea of TSA. These are the same people who constantly use topical steroids and don’t catch a break. I have been to immunosuppresant support groups where people sought support to justify their use of immunosuppresants and not welcome any contrary information that could really help their conditions.
Any board/support group that actively censors meaningful information is a board that does not respect information. Members of such groups will suffer/benefit on their own peril. Afterall, our worldview/perspectives are limited to what we experience daily through our senses. If we don’t seek to expand them, we remain in our self-isolated caves, or become frogs in a well. You belong to a matrix where the status quo is trying to keep the status quo, and you are not better off from where you have started.
Information is Power. Many people understand this and use this effectively to live their lives. Many people also fail to understand and respect information.
And no, this is not another post to laud the positives of moisturizer withdrawal. I have benefited from it and that is that, sharing my experience and hope my experience benefits others. The value of this information of MW is that, when I share that this technique works for me, someone else may try it. And when someone else tries and benefits from it, MW gets a +1. And when more people try it and MW get more +1, the technique gains credibility by virtue of numbers, or as an experiential treatment that has an empirical basis. We call this heuristics, or common/conventional wisdom.
The usefulness of MW will not be warranted if it only works for me but doesn’t work for 99% of the other TSW population. This concept will be shot down immediately and it will not gain any traction.
This is, in essence, how information retains or loses its power or quality. Overtime, good quality prevails. It is the same concept that applies in all our daily lives. Good quality material last longer. Good quality information gets retained and shared over a larger population. Good classic books last for ages. Classic songs are similar. Well made tools get longer utility over time, poorly made tools break easily. A person’s quality also shows through time.
This is also why the NoMoreSteroids.com project was started. This project is not just to provide awesome content, but also to create an open space for active discussion. The very end goals for this project is for people to actually derive personal benefits through the use of this space. The co-founders understand deeply that information is power and quality information translate to a better quality of life when information is properly utilized. We do not judge you if you use topical steroids, moisturizers or even immunosuppressants. All we do is ofter information, either to support you or as an alternative opinion, so that you can make the best value judgement you can for yourself.
Do pop by the website and join us at the forums too!