On Having MS | My Story, Misdiagnosis, Ableism

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.
**
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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[@donnamoore8479]

I was undiagnosed for about 20 years, treated with steroids every year. When I started dragging my left leg, had foot drop, I was told I had a bad knee, sciatica, bad hip, damaged lower back. Only had x-rays. By the time I got to a neurologist, by my request, he immediately thought MS . MRI s showed 2 brain lesions, 2 spinal lesions at T10 and T11. Within 3 years I could not walk. Maybe an earlier diagnosis could have, would have changed the course but here I am. It has been amazing how well everything works out.

[@CharlieBrookReads]

It’s awful how you have been treated by those professionals. You have been through a lot with all this. I remember when I was in the middle of all my worst flares I watched a video from Hank Green about chronic illness and finding a new normal and it did bring me some comfort. When your symptoms are fluctuating and evolving it’s especially hard to do that though. Just sending you loads of love as always 😘xxx

[@KierTheScrivener]

I love that video! I've watched it a lot of times as a comfort. Thank you. I've always found you such a bright light in this community ❤️

[@SilentThundersnow]

I LOVE YOUR POEM! made me cry. Beautiful.

[@KierTheScrivener]

Thank you 🥰

[@andeeheartsbooks7447]

Just found your channel via Victober video. Went perusing through your older videos and saw your health stuff. I completely hear you. Five years ago diagnosed with PPMS and a few years ago CFS/ME. The fatigue OMG. On disability now and when you described the grief you experience, I was nodding along. I am much older than you and feel robbed, I cannot imagine at your age. I was also dismissed...told it could not be MS two years before getting a second opinion. Glad you do not MS and hope you have answers soon.

[@SilentThundersnow]

Sorry for what you went through too.😢 It's so hard. 💕

[@bookinwithdebra]

Thank you so much for sharing your experience. I am so sorry you have had to go through all of this. I wish you all the best for the future. I really hope you are able to get the support that you need. Take care x

[@KierTheScrivener]

Thank you so much! ❤️❤️

[@WildeBookGarden]

nothing to add to all the very justified anger in the comments about how you were treated by doctors! I love you so much. Thank you for sharing with us 💞💞💞

[@KierTheScrivener]

Thanks for always being a kind, encouraging, safe space. Love you so much 🥰🥰🥰

[@SilentThundersnow]

I went through this. My daughter went through this. Hers started at 15. The problem is, this is catastrophic to someone's life, the same as being in an accident. If you were in an accident, people would rally around you and support you mentally and physically. People are so willing to help when they can SEE that something catastrophic has happened to you. But i went through hell, doctors minimizing my symptoms, and later my daughter was suddenly hit my the same symptoms, which i couldn't accept at first. No way she had what i had at such a young age. No way! But the first time i heard her say, 'hurry Mommy, i can't stand.' we were in line at the grocery store, i knew exactly what she was saying, but i told myself, oh my God that sounds familiar, but that's me , no way she has this! But i slowly had to accept that my daughter had it too. We haven't been diagnosed with anything but fibromyalgia and POTS. We get treated like dirt. But if it had been a car wreck, people would've understood the catastrophic nature of these illnesses. I couldn't feel my legs quite often. My brain felt like it was swollen. It was all so horrible, and then my daughter got it, and the had to go through the same mistreatment. And it's so hard getting your pain treated with fibromyalgia as a diagnosis, they think you just need to exercise more. I understand you, the ableism, all of it. I tell people i am sick with fibromyalgia, and they hear blah blah. They still expect me to do everything they do. Because i don't look sick. I've been screamed at for using wheelchairs in the store. I'm just telling you i hear you. I'm sorry for all you've been through. I wish you could get the support that you deserve. Believe in yourself. Believe in your deserving of special care. You deserve it, but you'll have to give much of it to yourself. Be the caregiver to yourself that you need. Be kind to yourself like a kind caregiver would be. I had to quit Veterinary Medicine, after doing very well in my undergraduate and in graduate school, i started getting so dizzy and weak. Most Drs said it was lack of exercise or mental illness. One Dr told me i had dysautonomia. He explained it so well. He was the only Dr who ever gave me validation when i was first sick. And he died soon after. My primary care Dr gave me an MRI, told me it was normal, and 2 years later, when i finally got to see a neurologist, i told her my MRI was normal, and she said 'I'm looking at it, it's not exactly 'normal.' 😮 I then went and got copies of it, and i had bright spots in my brain. And i had spent 2 years being told me brain symptoms were all in my head. Anyway.... Take care, if you ever see this. I'm a year late. Yeah i hate how we have to make the story palatable!! And what kind of person says, 'But does your daughter Even try to do anything?' 'You seem like you're doing great!' I hear you times 10000000. PS did you watch the Maya Kawalski trial? If you want to feel 2nd hand rage, watch her story. I want to hug people that have been through this, but not to embarrass them, just to give them an '8 understand, i hear you, i believe you.'😢

[@KierTheScrivener]

Our stories sound so similar. After waiting another 8 months after this I got my MRI and it was 'all clear' and just had my first (and last) neurological appointment where she told me there was no way I was telling the truth about my symptoms and told me to go to therapy. It was DEVASTATING. Thank you. I believe you too 🥰

[@KierTheScrivener]

I've never heard of Maya Kawalski I'll have to look her up

[@genevievet971]

💖💖 sending you love! i hope your MRI is easy on you

[@KierTheScrivener]

Thank you, my love

[@davidnandreabird7618]

I understand so much❤ It took me a couple years to get my autoimmune disease, Scleroderma, diagnosis. My doctor is a woman but I knew it was autoimmune disease and told her so and she didn’t like that. 😠 so she tried everything else before doing the blood test. Have you ever heard of Dr Terry Wahls? She has a book it’s interesting And I have tried some of the things and it helped me. Worth a read. Thank you for sharing your story.

[@KierTheScrivener]

I am sorry you've had similar experiences..fighting for blood tests are the worst. It's like this is a basic routine test. Just let me have it. It's not that complicated and it could be life changing for me. Thank you for commenting and for the recommendation ❤️

[@ismaeldiaz6367]

I’m glad this video popped up on my feed. Hope you’re doing good I’ve had ms for over 20 years now I was diagnosed at 11 And not only is it tough but a battle. Don’t know the time frame when you put this video up but have you looked into clinical trial or programs around your area ? I just recently started a little over two years ago now.

[@savagereads]

Thank you for sharing your story! ❤I am so sorry for your treatment by the medical community. When I take my kids to the doctor my concerns get dismissed but when my husband takes the kids he is taken seriously. It is so frustrating to see women being taken less seriously even by women doctors.

[@KierTheScrivener]

It is so frustrating how ingrained it is! It filters into everything. Thank you so much! ❤️

[@deanne9266]

I was diagnosed in 3 months with relapsing remitting MS because in 1990 I had a doctor that listened. I had paralysis on the left side following diagnosis and treated immediately with steroids and then was a patient in a study for Rebif. Unfortunately, my new Neurologist never told me I have myelomalacia and severe spinal stenosis. I found out by getting all my Radiology Reports going back 10 years. I asked this Neurologist for a referral to a Spine Surgeon and she would not. I should have had emergency surgery in 2014 to stop the spinal hemorrhage. I asked my Neurologist and she was silent. I saw activate spine surgeon and he blamed my condition on MS. This surgeon went to the same University and is covering up her mistake. Unfortunately with recent serious health issues I am gaslighted all the time. If it were not for persistence and doing my own medical research would have died 20 years ago. Recently, a mother took her daughter to ER in Kelowna, B.C. The daughter was extremely I’ll I think with RSV. She told the doctor her daughter needs a X-ray. He refused and told her to leave. The next day the daughter was extremely sick and developed into sepsis. Women know their bodies and their children. Women are always discriminated It is sickening!

[@MyCatholicBookNook]

I just found your channel and I really relate to this video. I had an autoimmune disease in my early 20s and the main symptoms were anxiety and cardiac problems. No one at university took me seriously when I told them I was sick because the symptoms were invisible, but then I got a terrible cold and lost my voice and people were like ‘oh you really are sick.’ Thankfully my physical problems are treated, but I still have debilitating anxiety, which again it’s hard to convince people is real. I hope you can get support and treatment. It’s terrible to go through something like MS, but people not believing you must make it even worse. I’m sorry you were treated that way.

[@KierTheScrivener]

I am so sorry you were not believed! And the ongoing anxiety is so hard 🥰

[@chez9831]

Thank you so much for your video. I can relate to everything you say, I have been finally diagnosed with MS but I had symptoms for many years and was also diagnosed with fibromyalgia and CFS beforehand. A few years ago I woke up with complete numbness down one side of my body and was told it was stress!

[@KierTheScrivener]

It's a travesty that we get missed again and again. I wish it wasn't relateable but I know it's nice to know we're not alone.

[@novellenovels]

I am so sorry you have had to go through all this. You know I live with chronic pain although mine is mostly my knee but recently I’ve got pain in my arm and hand. Im doing a Readathon with Naomi on invisible disabilities in May to shout these out. You are so right that people tend to say the wrong thing.

[@KierTheScrivener]

I am so sorry that it is spreading. It is so frustrating to have the constant pain and another part of the body that is throbbing can feel overwhelming. That's amazing! I have a list of books to read on invisible disabilities next years so I am psyched. What's Naomi's channel name? ❤️❤️

[@novellenovels]

@@KierTheScrivener her channel is Naomi’s bookshelf. I would love more recommendations on books with invisible disabilities

[@meganmanosh2827]

I have MS, I was diagnosed when I was 19 I'm 30 now. It's not something I would wish on my worst enemy. A lot of the things you described I have to, tremors, pain, missing words, having issues with my eyes, fatigue (which can be so disabling.). I also have a lot of brain fog and more. Mine is very cognitive. I feel like having MS has a lot of grief to it every time you lose something your losing a piece of yourself and your becoming more disabled. Which is awful. I'm constantly having to rearranging myself and constantly having to check in with myself to see if I can do certain thing or not and there's a lot of things I'm just not able to do anymore.there have been a lot of things I've had to give up because it's just not possible for me anymore. It's just awful. If you ever need someone to talk to about MS feel free to reach out.

[@KierTheScrivener]

You described it to a t. I am so sorry that this happened to you as well. 🥰

[@TheWordN3rd]

💜💜💜

[@KierTheScrivener]

❤️❤️

[@MargaretPinard]

💗💜💙

[@KierTheScrivener]

❤️🤎

[@jelenacluff1186]

I wish you get better and my advice just go private health care. That what I did . Cost me lots of money but I proof to stupid doctors I don’t have fibromyalgia,I have spinal fluid leak.❤