The Wednesday Wellness threads are meant to encourage users to ask for and provide advice and motivation to improve their lives. It isn't intended as a 'containment thread' and any content which could go here could instead be posted in its own thread. You could post:
-
Requests for advice and / or encouragement. On basically any topic and for any scale of problem.
-
Updates to let us know how you are doing. This provides valuable feedback on past advice / encouragement and will hopefully make people feel a little more motivated to follow through. If you want to be reminded to post your update, see the post titled 'update reminders', below.
-
Advice. This can be in response to a request for advice or just something that you think could be generally useful for many people here.
-
Encouragement. Probably best directed at specific users, but if you feel like just encouraging people in general I don't think anyone is going to object. I don't think I really need to say this, but just to be clear; encouragement should have a generally positive tone and not shame people (if people feel that shame might be an effective tool for motivating people, please discuss this so we can form a group consensus on how to use it rather than just trying it).
Jump in the discussion.
No email address required.
Notes -
Having a rare problem definitely changes how you see the medical world. Not in a pessimistic way though. More like, it's amazing our protocols work as well as they do. If you have a toothache, any doctor can give you a painkiller + antibiotic and the problem will just vanish. That guy's story kinda paints ordinary doctors in a bad light, but if there is no protocol for solving your problem, then doctors aren't really prepared to help. This criticism gets levied against psychiatrists a lot, but doctors operate the same way -- they just appear better because doctor protocols are much more advanced. Medical consensus has taught our doctors everything they know, so when it comes to fringe issues like ME which aren't acknowledged by the medical world, it only seems right to defer to consensus and ignore it too rather than go out on a limb & explore.
Rather than blaming ordinary doctors for doing their job, I think we need a better pipeline established between rare-disease-sufferers and genuine medical researchers. The problem is that for every person with a genuinely rare problem, there's probably 10+ people who fit neatly into a pre-established disease category, who constantly badger medical workers that they're different. That's why the doctors in that guy's story are so dismissive, they deal with this shit non-stop. Right now there's no simple way to prove you're a genuine outlier. Maybe there is and I missed it.
More options
Context Copy link