Welcome to the Autoimmune Recovery Project
Introduction
Hi, I'm Anna. I got diagnosed with Nuromyelitis optica (NMO) in 2020.
Then I got better.
I came here to tell my story.
My Story
This is a story of how I healed my tortured soul and rid myself of autoimmune disease.
The day of my diagnosis is the day my world came crashing down, and maybe that sounds a little dramatic. But, as I came to realise in the years afterwards, it wasn't really sudden at all. It was the slowest crumbling that happened over a lifetime. A drip, drip, drip on the structure of my being that eventually resulted in the medically diagnosable self-destruction of my body.
The doctor sat opposite me in the brightly lit consultation room and told me that I had neuromyelitis optica, an autoimmune disease that she described as being “similar to multiple sclerosis but with more rapid progression, and lacking periods of remission”. The blindness in my left eye was irreversible. And what’s more, without medication, she told me, I would be “blind and wheelchair-bound within five years”. With immunosuppressive medication, I could be relatively confident not to have any more episodes that resulted in irreversible damage.
My life at this point was already pretty depressing to me: as well as the aforementioned blindness in one eye, I had chronic fatigue, hyperthyroidism, headaches, eye pain, digestive problems, addictive habits, weakness, instability, numbness, tingling, insomnia, rage, depression, anxiety, manic episodes, and more. I had always assumed that a diagnosis would come with a treatment to help all of my problems get better. So the idea that not only was I stuck with all of my current misery, but that the only likely progression was deterioration, was completely horrifying to me.
So as I nodded along to the doctor’s outpouring of deadpan terror and thanked her for the information, then walked out of the hospital to meet my husband and infant daughter in the carpark, the only thing going through my mind was “No. Absolutely no way is that going to be my fate.”
And so began my process. The process that I had known my whole life that I needed to initiate: the process of healing my tortured soul.
I suppose that I knew it would be long. But if I had known just how long it was going to take for me to become a fully functioning, emotionally stable adult, I may never have started. So three cheers to ignorance!
When I was diagnosed with an autoimmune disease in 2020, I heard my doctor tell me that I had a chronic, degenerative, incurable disease. She told me to take medication to suppress my immune system, else risk going blind and being wheelchair-bound before I turned 40.
Thankfully I had heard a story about someone recovering from what her doctor told her at the time would be a 'fatal' autoimmune disease, so I started digging. I found lots of information once I started looking - and lots of products and services that I could pay money for - but had no idea who to believe or what was worth trying. I wished there was somewhere impartial where I could get some good advice. I tried trawling through journal articles but between fatigue, brain fog, parenting young children, and dealing with back-to-back viral infections due to immunosuppressants, I had little capacity for critical thinking.
Five years of trial and error and a few great therapists later, I am healthy and alert and able to provide for others what I had longed for myself.
Project History
Logo
The Autoimmune Recovery Project logo is a stylized dendritic cell.
Dendritic cells are such a cool part of the immune system! And when I read about how they work, I wondered whether they could be allies in my recovery if I could harness their power for good.
Dendritic cells are covered in long tendrils that take samples from all over the body and then take that information to other immune cells to demonstrate who might be friend and who might be foe. They are key to understanding why 'reducing inflammation' is so important in recovery.
Contact
anna@autoimmunerecoveryproject.com
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