I have an autoimmune disease and have found the attitude of the medical professional makes a huge difference. My first specialist said this is what you have and this is how we are treating you
I got moved to a different clinic and person who put a lot of effort into listening to me, we have adjusted my treatment plan depending on what works and what doesn’t. This has made a big difference to my quality of life
I suspect conditions like yours are a collection of things and everyone is a bit different so treatments need trying and tweaking. Open minded doctors who will work with you will help get the best results for you
You really are an amazing person Anna! Your writing has opened up my thinking in regards to Long COVID, that I have seen skeptical views being aired and thought them unkind and lacking in empathy. I never thought further than that though. My bout of COVID interested me because
1. It was all about me
2. a lot of the illness was between my ears, if I had flu I would have a rough idea of what to expect. I had no idea where that virus was going to land me therefore anxiety took root in me. The extreme tiredness and inability to function without sleeping was worrying to me as I had no idea if it would improve or stay with me.
Arohanui for what you are going through and yet able to deliver helpful information which is very appreciated! From reading your article today, I will be kinder to others and myself as I am unsure if I have a mild form of long COVID or just old age.
So sorry to hear about you and Jess, who are both contributing so much here in Aotearoa. It’s just not fair! My teen daughter has mild long covid and I’m sure she will eventually recover as long as she can avoid reinfections. My late brother had CFS for some years and was able to get much better. (I don’t like to think about whether his cancer death was precipitated by earlier illnesses 😬).
Nice one Anna. These things -chronic fatigue conditions, or any condition without conclusive medical parameters - can be so complex. As a earl teenager I was misdiagnosed with ME, which at the time seemed like a catch-all for any condition the medical profession couldn't put a label on. In my case, from my perspective now, I'm fairly sure I was severely depressed and refusing life, experiencing bullying at school and intense family dysfunction at home. "All in my head" doesn't begin to cover the complexity of physical/emotional/psychological/spiritual elements that are in play in a situation like this. Mind/body/emotions are complex and interwoven. But the disdain from people classifying anything as debilitating as this as "merely" psychological, or even "psychosomatic" is utterly unhelpful, prejudiced, and isolating. A more holistic way of looking at these things is needed, where all elements of the person are included in diagnosis and healing.
Sending aroha. To you and Jess. BTW, a 3 hour stint of writing is the most any of us are made for, on a good day, in my humble experience.
Thank you - and coming from you, that's a real compliment!
Very thoughtful piece
I have an autoimmune disease and have found the attitude of the medical professional makes a huge difference. My first specialist said this is what you have and this is how we are treating you
I got moved to a different clinic and person who put a lot of effort into listening to me, we have adjusted my treatment plan depending on what works and what doesn’t. This has made a big difference to my quality of life
I suspect conditions like yours are a collection of things and everyone is a bit different so treatments need trying and tweaking. Open minded doctors who will work with you will help get the best results for you
Great observations. And so glad things got better after what sounds like a rocky beginning. 🙂
Excellent, Anna.
Thanks, friend. 🧡
You really are an amazing person Anna! Your writing has opened up my thinking in regards to Long COVID, that I have seen skeptical views being aired and thought them unkind and lacking in empathy. I never thought further than that though. My bout of COVID interested me because
1. It was all about me
2. a lot of the illness was between my ears, if I had flu I would have a rough idea of what to expect. I had no idea where that virus was going to land me therefore anxiety took root in me. The extreme tiredness and inability to function without sleeping was worrying to me as I had no idea if it would improve or stay with me.
Arohanui for what you are going through and yet able to deliver helpful information which is very appreciated! From reading your article today, I will be kinder to others and myself as I am unsure if I have a mild form of long COVID or just old age.
So sorry to hear about you and Jess, who are both contributing so much here in Aotearoa. It’s just not fair! My teen daughter has mild long covid and I’m sure she will eventually recover as long as she can avoid reinfections. My late brother had CFS for some years and was able to get much better. (I don’t like to think about whether his cancer death was precipitated by earlier illnesses 😬).
As for the recent publication, I listened to the researchers here on RNZ and felt like they didn’t communicate their thoughts very well at all. https://podcasts.apple.com/nz/podcast/sunday-morning/id175136014?i=1000660659900 have you heard this?
Nice one Anna. These things -chronic fatigue conditions, or any condition without conclusive medical parameters - can be so complex. As a earl teenager I was misdiagnosed with ME, which at the time seemed like a catch-all for any condition the medical profession couldn't put a label on. In my case, from my perspective now, I'm fairly sure I was severely depressed and refusing life, experiencing bullying at school and intense family dysfunction at home. "All in my head" doesn't begin to cover the complexity of physical/emotional/psychological/spiritual elements that are in play in a situation like this. Mind/body/emotions are complex and interwoven. But the disdain from people classifying anything as debilitating as this as "merely" psychological, or even "psychosomatic" is utterly unhelpful, prejudiced, and isolating. A more holistic way of looking at these things is needed, where all elements of the person are included in diagnosis and healing.