Oh medication, having been around free range humans (aka those who are not housebound by chronic illness) I’ve been reminded of how much they cling to the idea that medication can fix everything. That when you get sick the doctor’s hand you pills that magically make it all ok again.
Any one who’s been chronically ill for more than a hot minute will tell you this is not the case. That medications come with their own issues and some of them are indistinguishable to the symptoms you are already experiencing, so you are never sure if they are helping or hindering.
I recently found out that a large chunk of my energy issues and brain fog was actually down to the fact that Dr Twat (as my previous doctor is lovingly nicknamed) insisted I go up to a very high dose of one med because a specialist wrote it in a letter 4 years ago… He was having none of my protests (being a woman I clearly had no knowledge of my body) and he refused further treatment until I had done as requested. Thank goodness I finally switched to a doctor who takes my experience into account and was highly concerned by the high dose.
At Inclusive Minds, where I was sat in a room full of publishers who were actually taking on board disabled experience they were utterly shocked to hear this tale. The idea that a Doctor wouldn’t be willing to listen to a patient was well beyond the realm of possibility for them. The fact that we are often belittled, told we are lying or just get abuse was horrifying for them.
It reminded me why it’s so important to do this work. To speak out about the treatment that we get or the lack of options we have. Our medical system is failing and chronic illness is rising. Until the average person who is unaffected by this issue realises it’s happening there is no possibility for change. So I will keep speaking out and telling our stories, over and over until they hear us and choose to make a stand.
No I am not just talking about the batshit idea that a ‘one size fits all’ clothing is a thing (BTW it’s not). I am talking about how we approach medical care. Assuming that everyone has the same access to money, education and resources or even just the capacity to deal with long term health care.
I was reading an article recently that was talking about the concept of gamifying healthcare. They talked off things like FitBit’s ultimately being a version of gamification. They reward you for reaching certain goals and you can share and compete with friends and other users. What was interesting is they used game theory to break down how different people react to different types of games. Very similar to how education breaks down learning styles.
Their argument was to truly get users invested in completing the ‘game’ and ultimately consistently change their health habits you need to design a platform that compliments each type of users style and engages them in a way that is meaningful.
Which really got me thinking about the article I mentioned in a previous post (link here). In the article they talked about having health hubs. These hubs would centre not around medication like GP but on the whole lifestyle of the person so things like rehabilitation, dietary health and non medication based healthcare. If you added to this the approach of looking at a patients ‘health care style’ or how they interact with the system, like the different gamer types. There is massive possibility to circumvent the fact that the current medical system doesn’t account for the patients background or privilege. This would become true patient centered healthcare!
I am so excited for the possibilities for reform that I think are starting to emerge. I think if people who are long term sick are listened to and we start to focus on the whole person, not just fixing the biggest symptom, there could be massive leaps not only in the way patients are treated but how much control they have in their treatment.