I have made a lot of videos on my health throughout the years, as it's deterioration happened suddenly when I was already booktubing. But here is one that I have put off for a long time. In May, after years of worsening symptoms doctors changed their proposed diagnosis from fibromyalgia to Multiple Sclerosis. It's been seven months of fearful limbo when waiting for an MRI to confirm lesions on my spinal cord/brain. I didn’t want to talk about it publicly until I had a firm diagnosis but as the long wait continues and I continue to deteriorate I wanted to talk about it.

In this video, I talk about some of my medical history and the ways in which fibromyalgia and Multiple Sclerosis operate in one's body. The misunderstanding and medical gaslighting that comes to those who develop chronic illnesses and disabilities later on in life and the effect of lack of proper care and misogyny can have.

I filmed this partly as a 'hey friends this is what is happening in my life' and also 'this is why it is really important to educate and advocate for people with disabilities.' I remember talking to Olivia Savannah from Olivia's Catastrophe about disability representation and how much tragedy is wrapped up in that and though I talk about grief and learning to accept limits I do believe that the greatest challenge of me having a disability is not the disability it is the lack of support, understanding and accommodation for people with disabilities. My pain and symptoms are scary and frightening and limiting but the compounding affects of ableism means fighting for dignity and respect and equal treatment on a slanted ice ramp.

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I spoke not the most clearly in waking up in pain part (but I had a lot of cut ins, so I will clarify here). As soon as I move I am aware of a base level of pain or disability, I have to figure out how much I can do this day. Sometimes I'll go to step and my legs won't hold me or I'll be so dizzy I can't focus, so I will plan my days so that I don't have to leave the house until afternoon or evening so I can accomodate or reschedule if needed. When I leave I will often use a cane but sometimes even when I have muscle weakness I will not because I will be eating (carrying a plate with a cane is impossible) or drinking, or it's icy or I also have arm weakness so a cane will compound the upper body pain. There is numerous reasons why I will or will not use a cane. But often I will get well intentioned questions of 'you have a disability?' as they give a once over of my body. and that's where Vivek Shraya's quote comes in because when you have people question and make you prove that you are really disabled time and time and time again it wears at your confidence. I've been called a hypochondriac or had well intentioned comments by lovely people that are trying to reassure me that I am not really sick so much that it wears away. I don't need to be reassured that I'll be okay, I want people who will stand up and stand beside when I'm not.

Which I am very lucky to have many people who do, but we're bad at listening to good over the bad so on some days when I have good health days I freak out because maybe I am just a drama queen and then as I carry out my day I feel the wear, the dizziness, weakness come and it really hurts and I am like, oh yeah, no, this is really real. But the slow, well intentioned 'you look fine' really does have it's negative effects.

Books Mentioned:
I'mAfraid Of Men (Vivek Shraya)



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