Thursday 21st May 2020
Hi ! Welcome back!
My first thematic post on this blog will inevitably be about my medical condition. So, before I start discussing that subject and entering any medical debates on here, we need to set down a few guidelines and one definite disclaimer.
These are not rules; the intention is to prevent arguments as we must acknowledge that these are touchy subjects for most of the people affected. Yes, discussing personal health is very sensitive and private, however, we must be able to find a way to speak to each other about it without finding offence in each other’s words and creating deeper divisions in already isolated communities.
Dark divisive vines weed through conversations when we start to compare our treatments, our freedom and our scars. The tension comes from our social tendencies of colouring people as good patients and others described as defiant or challenging, the difference you ask? The latter challenges the suggested rules of doctors. Whether it be about medical treatments or lifestyle debaucheries.
puff puff pass the spark
There should be a focus on finding a way to connect as humans again, without feeling like we are going to be scrutinised for our choices when we finally get released from the pressures of being under age.
The things that are discussed in this blog are intended to be read as testimonies of personal experiences and struggles. No one here is claiming that what works for them will work for others too. These are opinions, not to be confused with professional medical advice.
We all struggle. No comparison needed there. All of our varied experiences and past deserves to be believed.
why is this important?
Nowadays, there are so many treatments and interventions available that it has created a sort of social understanding that if you can treat something, you must do it, it is only logical. Why wouldn’t you, right? Well, the reason why I need to make this disclaimer clear is because I believe people are entitled to handle and deal with their own conditions however they want to, without having to fulfil any type of pre-made conceptions of what healthcare should look like from the outside.
An extreme I will firmly defend.
Additionally, the way someone manages their disease should not feel like a comment, advice or attack on anyone else’s situation. An illness is never exactly the same for two people.
Let alone hundreds of thousands.
We should be able to explore different ways of managing our difficulties and pains without it being an attack on the medical system and a sort of fuck you to doctors. In my case, there are some medication that I take exactly like I am prescribed and a on top of that I am a big fan of herbal supplements and homeopathy.
Both laughed at by many doctors but I swear it helps me…
So, my point is you should be free to make all the adjustments in the world to your own healthcare, and to take it a step further … you deserve to have the right to share that experience and talk to people about it without getting attacked.
That is the sort of protection I will uphold on here.
And that is the type of kindness I want to see from people who interact with this blog.
one minute of silent appreciation for the Medical Industry
just one minute…
Listen, I was diagnosed at 11 months old after I had completely stopped growing and caught pneumonia. And medicine is what brought me back. I am now 24; a grown adult with multiple jobs and an active social life. So, I understand how responsible they are for helping me survive my childhood.
For that I am grateful.
But what happens with child patients is that for a long time (at least a full decade) people tell you what to do, how to medicate, and essentially how much of a child you get to be. This makes complete sense because kids at that age do not understand the world behind therapies. But as that child grows, so should their authority over their own life and especially what degree of medical intervention they will have to experience. Problem is that most times, they are not given that authority.
So, however grateful I am for the doctors that helped, I will still put into question anything that becomes problematic; even basic and essential medication
As patients live with their illnesses as one, we come to understand it better than doctors. To feel it instead of quantifying it. Or even see it as a little ghost in the corner of your bedroom. However, sometimes it is really challenging to vocalise how your body feels on the inside.
Are those my kidneys? Is this muscular? Is that nerve pain dangerous?
Sometimes we simply don’t know how to explain it, or we explain it in the wrong way and it gets pushed aside as unclear or just an extension of another problem. Often if our problems can’t be resolved, in the most typical of ways in regards to that medical condition, doctors will just prefer to give up on resolving the issue, rather than accepting non-westernised, or controversial treatments seriously.
Regardless of whether or not a patient brings those other types of treatments into discussion.
But more importantly doctors are extremely reluctant to question the medication that is certified and already on pharmacy shelves.
And that is dangerous.
Will this be the ultimate battle of experience vs. knowledge?
Who will win?
pharmaceuticals are money we know who wins
I hope you can see that the intention behind this post was to ensure that the blog is kept as a safe space for all loud, hot-headed and slightly dysfunctional weirdos. One of the ways I manage how isolating my illness feels, is by allowing myself to always express my feelings and emotions instead of keeping them inside.
I tend to bottle up my chronic pain already, and my back is getting a little tired, sorry.
I can sometimes be seen as controversial within my CF community, but I have found a way to live that suits me and I don’t want to be attacked for that anymore. And I’m hoping I’m not the only person that decided to cheat on their medical ball and chain so that we can talk and compare how amazingly different lives can be.
Because if the status quo doesn’t fit you, it doesn’t mean nothing will. But challenging doctors can be scary, and without a strong support system I understand why some people wouldn’t risk being uncomfortably alive for only a maybe when you know how sick and still weirdly alive someone can be. And it’s not an enjoyable purgatory. If you’ve been told your whole childhood that you’re so broken that intense medical intervention is the only way to survive… you tend to believe it.
power dynamics in hospitals…?
If anything, you can read about my experiments through this blog. And make up your own mind about it.
thanks for reading until the end!
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