Hey. I’ve been wanting to write a little update about my health for some time now but the truth is it’s been too difficult to face. There’s this feeling, that I know my chronic illness family will be all too familiar with, where things get bad, they crescendo, you become overwhelmed and then you reach a point where although nothing has changed within your illness or within the level of suffering, your ‘new normal’ (a term that has now been widely adopted in this current global crisis) becomes, well…accepted. You have no choice but to get on with it, to adapt. There is no choice but to deal with these symptoms and we do this often, with little or no help. But of course it doesn’t end there. Incoming is the next wave, the next bundle of great chaos that inflicts our bodies, again somehow, merely because of this lack of choice, a lack of help, we adapt to this new level of illness. This cycle goes on and on and it builds and before we know it we don’t know where we begin and end.
Well I guess I bring this up because where I can normally talk very openly about my health, this past year has been a struggle. Simply because I have needed to escape. An irony really, when it is the one thing I simply can not do. But you see, thinking about things, speaking about things, opening up about this added struggle, about health has been triggering to the neglect I’ve endured this last year and so I have had to be silent. I guess in a way to protect myself. Therefore I am duly aware that I haven’t been able to be as present as I would have liked with my fellow chronic illness world online on instagram.
Of course, a global pandemic amidst all of this would not serve me well in this (I’m well aware it has affected others worse) but that has only been the last few months and cannot account for the last fourteen.
There is a strange feeling when you are used to medical neglect, medical gaslighting and such, that you would expect to be immune to it, to have a force shield surrounding you if you will, to protect yourself. To be aware how to fight it, to have the knowledge and the power to stand up for your rights, surely, after this has happened time and time again? The sad truth is, I am the ideal candidate to endure further. You see, I am too poorly to fight, I am so poorly I will do anything for help, I am so very poorly that I am fearful that standing up for myself, complaining will affect my care and when I have tried to do so I have been told this will indeed be the case. So I endure it. And I have. Until I was pushed to the edge.
I am emotionally and mentally exhausted. Let’s not even attempt to delve into the physical. I just feel broken. I live in a first world country and I have to fight for my basic right to health care, to not be medically neglected and medically abused every damn time. It breaks my heart to know how many others are going through the very same thing as me right now and to those who don’t have this access to care in the first place that I do.
I’m not quite sure where I’m going with this post if I’m honest, I realise I haven’t even said much concrete, perhaps that is protection mode stepping in in itself. But something must change. Doctors, medical professionals need to be aware of their actions and indeed inactions. They have a choice to help, to fulfil their oath ‘first do no harm‘. I can say with all honesty that the duty of care has not been fulfilled these last fourteen months. Without my family I simply wouldn’t be. Please, do not neglect your paitents, do not gaslight us. Please educate yourselves so that medical ignorance need not exist. I know there are more incredible, kind, supportive medical professionals out there than not, goodness we have seen this in the millions with this pandemic. I simply speak to those who are choosing to treat their patients negligently, whether knowingly or not, please be kind. Please listen to us, respect us, we know our bodies, we respect your knowledge. Let us be a team together.
With love and respect ❤️
Read more on my life with Severe ME/CFS and my thoughts on Ageing With Chronic Illness.
Yes. Absolutely. I feel exactly the same. Its impossible. An invidious position for us to be in. Sending love and empathy.
Thank you, I apprreicate that. Sending much love and empathy back to you.