I am breaking the cardinal rule of pain club and I am actually going to talk about pain.
It was only the other day, when I was talking with a fellow spoonie friend that I realised to some extent we all actively avoid talking about our pain.
I think in the beginning it’s about not creating too much fuss or even just not really knowing how to handle the amount of pain you are in. But as time goes on I find myself talking about it less and less. It’s not for fear of my network, I have some incredible support both online and offline. It’s more a fear of admitting how bad it really is.
Being forced to acknowledge the pain, for me, is still really scary. There isn’t much my doctor’s can do and the level of pain sometimes feels like it will engulf me. No wonder I am hesitant to draw attention to it.
I think it’s important to acknowledge these coping mechanisms and understand how they have been shaped by our experience. Some people will have been actively told they complain too much, either by doctors or those close to them. Some like me just can’t handle shining a light on that pain. What ever drives you to not speak about it don’t look at it as a failure. It’s you trying to protect yourself and you are doing the very best you can with a shitty situation.
Recently I’ve been thinking about the importance of researching any medical procedures and or science you are basing decisions on.
With the release of The Goop Lab over on Netflix more than ever I am worried about some of the science that we base decisions off of and I wanted to break down how I normally do my research when I am talking about things like white papers or new research that has been released.
The first thing you need to look at is the credibility of the source of information. For example I would often trust organisations such as the CDC and NHS when looking for medical information. However even places like this are prone to not updating information, just look at how the CDC has now finally removed the graded exercise therapy stuff from their website yet despite all the evidence the NHS has yet to do this. It’s important to look at the information and dialogue around the subject matter you are researching. For the GET example it’s important to know that a lot of the research GET is based on has now been deemed unreliable.
The next thing you need to be aware of when looking at medical studies is how many people are involved in the study and do they represent a good cross section of society. For example most pain studies are only carried out on men. Despite the fact that we know women react to pain relief very differently. These drugs are still put into circulation without ever being tested on HALF the population. Not to mention that diversity is a massive issue in medicine and often the people tested on is white men. This brings a whole host of issues.
The other thing to be aware of is the information they are excluding from a study. It is common in medical studies to get anomalies in the data. Often if it’s just one person for example they disregard that information. The problem arises when they aren’t using a big enough cross section of people. That one person’s odd result could account for 10% of the population!
Finally this is just a tip I have picked up from the wonderful Natasha Lipman but if you are looking at any kind of new medication or treatment just type in the name to google with pseudo science. This will bring up all the info debunking the theories behind what you are researching. Again it’s important to know both sides of the argument.
I know researching can be hard, especially with brain fog but the old adage of ‘knowledge is power’ rings all too true in our world. Arming yourself with this knowledge can help you play a more active role in your medical care.