How to Get Better When Things Are Getting Worse: Part Five
I did a bit of a side step for Part 4 as a standalone piece on Failure with Intent, but now we are back and we move our focus to what can be done to get better when things are getting worse.
There are many who have and do focus on advocacy for better treatments and better access to treatments. However, that is a space filled with depletion and exhaustion. For those already trying to navigate the drawdown of whatever condition has them in them in their grips, there is not a tremendous amount of extra energy available to advocate for oneself let alone others.
Nonetheless, these communities of activists can do great things. The utterly debunked PACE trial for using exercise and cognitive behavioural therapy to treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) would still be the dominant and damaging treatment protocol were it not for those dealing with ME/CFS who lobbied hard to have the trial data released to uncover the poor design and conclusions. Defense of the PACE Trial is based on argumentation fallacies is a great read because it also highlights what kinds of pushback all advocacy groups and individual advocates receive on a daily basis. The energy needed to engage with argumentation fallacies is the reason why advocacy is best done in groups.
While grass roots advocacy groups do great things for lobbying for patients and improving treatment options, you will be responsible for your own level of desperation and gullibility if you decide joining with these groups will help you. You do have to own your wishes and hopes and recognize that these things might make you particularly gullible to those who have an n=1 example of taking supplement/substance x to realize improvement y in symptoms. And please know that this gullibility is not a personal failure; it is simply a natural process of development for everyone facing a new diagnosis for which medical cures are nonexistent. If you are newly diagnosed, you will be dealing with anguish and adjustment and these things will colour your judgment. The vast majority who chime in to say to you “Well I had some real improvement by doing this…,” do so for no other reason beyond the hope that it might help you. And frankly you can just as easily be seriously harmed by whatever supplement worked for them as when you accept TAU (treatment as usual) offered up by a fully-accredited healthcare practitioner. As a reminder, exercise and cognitive behavioural therapy are most heavily prescribed to those with ME/CFS by fully accredited healthcare practitioners as they hang onto outdated dogma and fail to pay any attention to the research out there, let along bother to actually listen to how damaging these options have been for their own patients.
When a commercial plane is about to fall out the sky, the cockpit crew is trained to immediately do nothing. Just for a few breaths obviously, but long enough to avoid doing something without thinking. Next, they turn to their manuals. If you are newly diagnosed, or have just had a pile of new of symptoms or worsening symptoms show up that have been screened and assessed, resist the urge to careen into action immediately just to give yourself a better chance of engaging in some critical thought.
Pilots have their manuals and checklists, what do you have in your life to direct you to keeping your plane in the air? Next week we look at this in Part Six.
