An Honest Reality Check | the truth about living with chronic illness 🥲

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feel free to leave any extra questions in the comments below and i can answer them in a future video! 💘

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✨ TIMESTAMPS✨
00:00 - how i’ve been doing
01:27 - pacing & falling into a “boom and bust” cycle
02:37 - fear of missing out
03:14 - being disabled is not fun
04:13 - physical regression & a scary episode
05:11 - it’s okay to feel “behind”
06:25 - taking care of mental health during a flare-up
07:58 - how chronic illness can impact autism
08:26 - grieving your non-disabled life
09:59 - update on my health & flare-up
12:37 - plans for the day & what i’m currently reading
12:57 - outro

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✰ FAQs ✰
1.What conditions do I have?
‣ I have Tourette's Syndrome, FND and dysautonomia along with being autistic and queer! I also advocate for mental health.
2. What is FND? 🧠
3. What is Tourette's?
4. What do I use to edit videos? 🖥️
‣ Final Cut Pro X
5. What filming equipment do I use? 📸

(*af links mean i make a small cut from any purchases, but this doesn't cost or affect you! 💕)

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✰ About Me ✰
My name is Zara Beth (zeezee25 on tiktok) and I post videos about disability, neurodiversity and living with Tourette's Syndrome, Functional Neurological Disorder (FND) and Dysautonomia. Tourette's syndrome is a neurological condition causing involuntary movements called tics.
I use my social media (TikTok, YouTube & Instagram) to advocate and raise awareness for my conditions and share what it's like living as a neurodivergent and disabled person. I am autistic, sharing my sensory struggles along with my experiences with mental health disorders.
I share the accommodations I use to help my daily life, and I'm an ambulatory wheelchair user documenting my life using mobility aids and how chronic illness symptoms vary from day to day!
I'm a musician with a song called "She's Mine" available on all streaming platforms, and I'm an artist with a small business and website selling my artwork, disability merch. I also love reading, writing, and I'm currently writing a novel and a book/memoir about my life!

[marcusaurelius]

Comparison is the thief of joy. It is one of the hardest lessons I have learned in life. I have now accepted that my life will not look like many others in my social group, and that is just OK. I don’t have to like it, but I have learned to accept it…most days

[Cailus]

Oof. I get an average of six hours per day of freedom before my dystonia forces me back to bed. It's split in three periods, but still. Respect.

[oree]

As someone with severe me/cfs please take care of yourself, your health is so important❤

[Adairaa]

Zara, TAKE YOUR TIME!!! We love your videos, but the one thing we love more is you being healthy and comfortable! Take a month off, hell take a year off, as long as you are ok we are happy.

[nerveendings]

I've definitely been having one of those weeks full of disability grief and frustration! What helps me most during those times is finding comfort in the disability community sharing things like this, so thank you <3 and I'm so glad your adaptations are helping more!

[ryzechdev]

Not many people actually understand this! I can try to explain my chronic pain and illnesses but no one really gets it unless they go through it, it’s always rough :( but im glad to have found this channel and other people going through this

[SD-Teru]

Having people like you and the folks in the comments really help me remember that I'm not alone

Ik I don't have it as bad as a lot of people but it still hurts that I can't do everything others can do
I have a slipped disc for the past 4 years which restricts me from sitting down and as a student still it's something i cant avoid
I feel so much pain and pain killers don't do much
My condition shouldn't have lasted for so long and we're not sure what's wrong

The FOMO is also very real
I can't join any clubs I go home right after school and just lay on my bed for hours

I feel like my teenage years have been wasted (I turned 17 this year) so from 13 years old I've been stuck like this

Everyone is so strong for getting through life despite their own health and psychological issues
Love yall

[darlinqtoni]

I love your videos and the representation you share! Your openness to your FND allowed me to know a good clearance of info on it, recently a classmate got diagnosed with it and funnily enough I am the one who told her things about her own disability. Thank you ❤️❤️❤️❤️❤️❤️

[jeyjey]

I can relate so much! Especially the "I can't do all the adult things"
I am so frustrated atm because things finally got better, but then (EVERYTIME!) some of the other symptoms are
getting worse or some new health shit is happening.
I'm so sick of this roller-coaster...
And I can't bare to see all the adult things other people are doing...
It so frustrating

Sending you big hugs❤

[TherapyKitt]

You are so right that holding ourselves back gives us independence. That’s something I’ve been learning recently. Thank you for sharing and reminding me I’m not alone!

[MadCupcake]

Sending you hugs, it is such a rollercoaster. Pacing is such a tough thing to continually do, nobody with chronic illness will ever be 'perfect' in pacing themselves.

I relate to FOMO a lot. It's hard have to constantly weigh up decisions on doing stuff plus the pros and cons is such a pain in the arse, the lack of freedom is so disheartening. We need to be kind with ourselves. Praise ourselves when we do those little achievements.

[Elliot-thefrog]

I push myself back a lot and tell myself that I’m not “ill enough” or “disabled enough” to use a mobility aid or complain about the pain I’m in and it’s really hard to just tell myself that it’s ok to be disabled or chronically ill, I’ve just come back from a short holiday and I’m already going into a flair up 😓 it’s really physically and mentally challenging just existing now, but I’ll get through it and I hope the person reading this knows that it’s ok to not be ok <3

[EmOrganically]

"It is just shit." LoL, I feel you, and also I'm sorry. You are amazing, and I I love you.

[corazannasplaylists]

Thanks for making this! It's really encouraging to me as someone who has a chronic illness and I really have to remind myself that it's ok to not be able to do something. My issues are really related to cold, and with fall and winter coming on, its tricky but its good to see creators being encouraging! Thx!!!

[PeggyWebb]

The mourning took me by surprise. Mourning the life I was preparing for before my chronic illness. Keep finding joy every day!

[just.try.ok]

You're helping so many people by sharing these videos. I love you and your content <3

[notgettinganysleep]

you are SO strong Zara! i get it also im in a flare up too with my own chronic illness and my OCD has been a big factor and i can hardly do a thing without a intrusive thought or a compulsion, i really get it! <333 we'll get through this together! in almost the same slump <33

[Kraftukatt]

I’ve been watching you for some time but never commented before, but today I just wanted to say that I understand what you’re going through. I have so many chronic illnesses, some diagnosed, some I’m fighting to get diagnosed. I’m older than you but I’ve been through all the same emotions. You’re definitely not alone. Please don’t feel pressured to upload content, wait for a day when you feel you can manage it. Much love ❤

[Jetz]

hope your ok <3

we all love you much

[ishaan]

we will always be with you and support you dw when you feel down just remember there are loads of people who believe in you and support you :)