Inside The Mind Of A Teen With Undiagnosed Brain Inflammation { My Old Diary }
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- Опубликовано: 15 сен 2024
- CONTENT WARNING 16+ ONLY PLEASE.
Hey everyone x
Very nervous about posting this one, I know I've said this about a video before but I think this is the most vulnerable I've ever been. I hope this really shows the truth and dangers of encephalitis being un-diagnosed and untreated. Sufferers can easily slip through the cracks, misdiagnosed with depression, psychosis, schizophrenia, anxious, anorexia, the list goes on. When in fact all of it is caused by brain inflammation, mimicking other conditions and hiding in plain sight.
This wasn't an easy video to make, I realize now that I was very wobbly the day I filmed this, and very emotional. I perhaps wasn't ready to see the things I did in my diary on that exact day. I actually kept this in my camera roll for weeks, unsure whether to even post it, and too scared to edit it and hear it all over again. But I believe this type of video is just perfect for showing the dangers of encephalitis not being caught early.
Thank you for watching & supporting, I love you x
Evie, as someone with PANS I completely understand how horrific this disease is. I know how hard it is to share these kinds of things and I just wanna say how thankful I am that you do. We love you!!!
hope your doing well
Thanks!
Yvvie - I’m so amazed at your strength and open heart for you and family to share all this. I have been subscribed and monitoring for a couple years. It’s unimaginable to consider all that you and fam have been through. It’s hard enough just being a “normal” adolescent and hoping to make it through to your 20’s. But to have the ticks (which normalizes alittle), and seizures - to find out that it was PANDAS mostly all that time. You ARE a super hero. I’ve witnessed your family through your videos and they’ve all been incredible but … your mom has been your Atlas.
Forgive me for sounding weird and know this comes from someone in the healthcare field who wanted to specialize in Adolescent mental health AND a father of a teenage girl.
I love you for the strong, perserverant, open hearted, loving person you are. I am so thank you for your videos. Your video, singing to your mom - “Love you to the moon and back.” makes me cry everytime I play it.
Aaron
wow, this is beyond generous and such a lovely comment. thank you Aaron❤️❤️
Thank you. We have been to hell and back and at times I wasn’t sure she could come back to us. We’re the lucky ones , some don’t make it. We’re still fighting this disease and will fight as hard and long as it takes. We will keep raising awareness of Pandas/Pans so others don’t suffer the same way. Thank you for your kindness 🥰 Evie’s mum Sam x
Just to hear you read your diaries makes me want to share my diagnosis I have William syndrome and everyday I get bullied and I'm sick and tired of getting bullied by people and I don't know what to do but if you can tell me what to do please that would be great cuz I keep on getting bullied everyday
@@illyramoney2022 I used to and still get bullied because of my tics but honestly I just stopped caring. People who bully others have no consideration for how they make people feel. My honest advice is to write down your feelings and thoughts to get it all out of your head, do things you enjoy like hobbies or going out with friends and family and remember that people love you and the ones who are rude to you don't matter. Stay strong hun I hope you're alright ❤️❤️x
You know I never really write down what I'm feeling but I do know that I can write down like what is going through my head and I try so hard to write it down like the fact that she had to read that it made me wonder if she's going to be able to make it because I wonder if her tourette's are like you know better but she did read it to us in a really nice way I just pray that she get the strength that she needs carry on Eevee and remember you're not alone
Oh Evie. I cried right along with you. Little Evie would be proud of how far you’ve come. Little Evie should have never went through that. Don’t apologize for it being an emotional video. We all love you and will support you through everything ❤
the diaries of a very brave human who had no idea how much people loved her ❤
I had never heard of pandas or pans. You are opening people’s eyes to what sounds like a terrifying illness. Thank you eavie ❤
I have PANS, I am literally shaking rn because of how similar your experience in those journals is to mine. My journal from when I was getting hospitalized is so insanely similar. I hope your treatment goes well and all this can be truly in the past. Love from the USA
hope your doing better now
This made me so emotional, I don't have PANDAS/PANS but I'm autistic and I've always found immense comfort from you sharing your disability. I'm 16 now but I've been having suicidal thoughts since I was 9 or 10, this has actually brought me some comfort knowing that people who have suffered the same thoughts of not mattering, being a burden to everyone around, feeling like you deserve nothing, feeling completely alone. The harming. It's actually meant so much for you to share your thoughts and emotions and knowing that no matter what disability anyone has, that people suffer this no matter the circumstances. But you are an inspiration to everyone for how strong you are. Just thank you so much for being so open, it's helped me and so many other people so much.
im autistic as well, things do get better, i suffer from bipolar 2 and adhd, but i do totally agree, i just wish mental health were more normalized
@@LyraPyxisVT I’m also autistic but wasn’t diagnosed until I was 28 and was told I was let down for a long time by a Psychiatrist that finally said to me “I think you’re Autistic”.
That led to me being diagnosed by a Professor that specialised in Autism for over 20 years.
I think some of us just slip through the cracks unfortunately.
But getting the diagnosis helped me understand myself a lot more.
I’m also Schizophrenic but didn’t know I was because I wouldn’t be able to remember my episodes of Psychosis. I started to remember them all after a particularly bad episode which was very hard to accept. Thankfully I take medication now and get visited every few weeks by a mental health practitioner who is a lovely person who I can really open up to. I agree with what you said, I wish more people understood mental health and were more accepting. I don’t even tell people I’m diagnosed with any of this offline. It’s good that there are communities like this on the internet though.
@@Thehappymasksalesman yes, and I'm glad you're doing so much better, I was diagnosed with autism at 3 cause I showed severe signs of it, I was unresponsive to my name and sounds, which caused a doctor to do testing on me and one of them was a hearing test that I failed
I'm autistic too and noticed a number of similarities between it and PANDAS.
@@LyraPyxisVT My teachers and parents thought I was Deaf or something too but turns out it was autism.
Watching this shows how strong you are. You lived through this all and you’ve even shared those important, depressing times - I’m sure that every one of us are proud of you 💜💜
All the people from every corner of the earth who watch you worry about you, believe and love you!!! We are with you, Evie! ❤❤❤
evie, you are an insanely brave person. you’ve gone through hell, yet you still smile. you are brave for many reasons, you’ve gone through the HELL, you are brave for posting this, etc. you also are so amazing for putting a warning, especially because these things can be triggering. you are amazing, such an incredible person, you amaze me everyday online. ❤❤❤
I grew up very close to someone with severe mental illness and it's absolutely heartbreaking to watch someone you love struggle so hard.. she lost the battle and is not longer here to share her story. The fact that you have made it through so much and have had the heart to share your most vulnerable self proves that it's POSSIBLE to get better. Life is worth living. You're my hero.
Aww Evie I am so proud of you! Posting this must have been really scary. I can’t imagine how hard PANDAS is too live with. As someone who has never heard of PANDAS thank you for spreading awareness and showing that this autoimmune disease isn’t positive. You are so strong! ❤
You express yourself so well, Evie - both now and in your teenage diaries. This must have been a difficult video to make. It was a difficult watch. You nearly had me blubbing, and I'm a grown man! I'm sure your insight into your condition helps you to manage it. Remember, it's not you, it's your health condition which is causing all this. Do keep us posted on your treatment in Poland. Hugs.
I did burn my diary from the time I experienced severe trauma and was at my worst..now I’m kinda sad that I did bc no matter how painfully it was going through these pages, it was still part of me and proof to myself that I got better..
It’s so brave of you openly reading these pages. I do not have PANDAS but depression, anxiety etc. and I’m only halfway through your video but I’m already crying with you because your teenage words remind me of mine..especially because we were around the same age when we started feeling horrible. Like around 13…14 years old. I was depressed and scared of everything anyways but that was the time I realised that I am trans..felt so alone, scared and helpless. Then I almost lost my best friend to depression and it was just a lot.
I don’t think I’d be able to read out the things I wrote at the time, to the public. So I’m proud of you for doing so and education about PANDAS/PANS. you’re incredible and inspiring! Much love to you Evie ❤
You’re so strong for doing this, going back and reading old diaries for me was so hard! ❤️❤️
I think we can all agree how strong and kind you are , you are a loving beautiful woman ! I often struggle with the way I look , how clothes feel , the texture of food ect ( not diagnosed with anything yet working towards tho ) you are so brave and just remember that there are people that love you , and haters gonna hate , don't listen to them( i cryed while watching this ) ❤😊 i love you ❤
This put me in tears becuase although I don't have pandas. I've been through alot of trauma throughout school and life and those depressive thoughts and experiences. It's crazy how some people just go through hell for years and years and come out of it. To realise how bad what we actually went through was. Im proud of everyone who's ever felt or been through simular stuff
As someone who has always written journals and also had mental health issues, (OCD, depression, anxiety) I know how personal journals are and I appreciate your willingness to share your experience. You're an inspiration to those who watch you. Hugs from Kentucky. ❤😊
I usually rarely comment on any videos but this really touched me. When you started crying, I did too because it was so heartbreaking. I've been through a bit too and although it's not to the level that you experienced, I still understand how a lot of it feels. I'm so happy that you decided to post this and so proud of you ❤️
Remember that we all love you Evie and you will always be a inside to others!!!!❤️❤️
Wow, Evie.. I’m a bit speechless after watching this video. Even for outsiders it’s emotional to watch and hear what you’ve been through. Let alone for you and your family. I’m so proud of you for sharing this, wanting to educate people about PANDAS. Stay strong Evie❤
You made this grown ass middle age dude cry.. I can't even begin to imagine how it must have felt what you have gone through. It's not like I don't have my own issues (for instance I had to leave my son behind with my ex in China), but they're nothing compared to what you've gone through. I'm happy you're now in a better situation. I know this is a year ago but one look at the list of your more recent videos looks like you're more able to enjoy your life now. Take care. I hope you can keep getting better day by day, week by week 🤗
Hearing how sad you were & the self hatred young Evie felt is heartbreaking, you really have come leaps and bounds. It’s terrible that you went through what you did. The fear you must’ve felt sounded crippling. Thank you so much for sharing what I can only imagine was so hard to read through. This is going to help bring so much awareness to so many children, teens & adults as well as parents to see what symptoms to look for in PANDAS/PANS sufferers. You weren’t a burden then & you’re most definitely not one now either. Young Evie would be so proud of who you are today & how much you’ve done for not only the PANDAS/PANS community, but to countless others. You’re so strong doing this, and even if the video didn’t turn out how you wanted, it’s an amazing one. Just like you Evie Pie, love you always 🤍
You did find the courage. You’re amazing. We’re all so proud of you
You are incredibly strong especially little Evie. She's made it through and she's made you so incredibly sweet. This is eye opening and very helpful. Just take it on day at a time and we are so grateful you're still here
Thank you for being so vulnerable with us 💕 you may help another family avoid nine years of terrifying experiences with your educational, personal and insightful videos. Sending so much love your way, Evie. 🫶🏻
Oh, Evie, this was so heartbreaking to watch. Even more heartbreaking since you were so young. Don't ever apologize about being a "mess", you had every reason to react how you did. As someone who also struggles with Selective Mutism, OCD and Derealization this hit really close to home. I love you and I am exremely proud of you. You are so strong, and a huge inspiration to me. Thank you.
Oh, Sweetheart, this video is both heartbreaking and inspiring in equal measures. Going over our painful pasts can be hard, but it helps to remind us of just how far we've come. You survived something torturous and terrifying and here you are, sharing it for the world to see, in the hopes that it will help others. You're an incredible young lady Evie, who brings a lot of light to the world. Never forget how awesome you are ❤.
Evie, the diaries are a glance in how much of a fighter you and your family are and you've become. Thank you for sharing it, because it can make a world of difference to anyone who's currently going through it as well.
Wow. You really never know what someone is going through… so always be kind. I couldn’t help but cry when I watched this. As a teen I had severe mental health problems and autoimmune problems that affected my brain that I still don’t understand to this day. I was totally unaware of PANDAS. Thank you for sharing your story and spreading awareness. You are very strong and resilient to have survived this.
I just want to give the girl in your diaries a hug and show her your videos. Nobody should ever have to feel like that, but especially someone so young!
Thank you so much for having the strength to share this. I know I tell you this all of the time but you have no idea how many people relate to exactly what was going through your head at these dark times. We're all so similar yet to unique at the same time. The brain is a beautiful yet, dangerous place. Sometimes our biggest enemy is ourselves and I'm so glad you can look back on this and know that you're making progress. Please, always remember, progress not perfection. We love you and big hugs for little Evie. She did great and without her, we wouldn't have you. ❤
Evie, I discovered you around 2018 or 2019 when (im thinking) you maybe had become friends with max and harvey. Although I will never fully understand your condition bc i don't have it. I'm incredibly proud of you for being so brave to talk about and show the bad parts of your condition. I just recently started listening to your book on audible. I have epilepsy and i know(i think) your pandas/pans causes seizures and that's something i kinda relate too bc i've had 2 and they were quite scary, so i can only imagine how you feel. You're incredibly inspiring. I'm someone who tries to pray on a regular basis and since discovering you, i always find myself praying that anything you're struggling with gets fixed or that your get answers to things or whatever it might be in the moment. i do this bc you inspire me to keep pushing even on the bad days. that regardless of if i'm going through something bc of a health issue or for any other reason that it can/will get better as long as i do my best to try and see the positive and reach out if i need help. thank you for sharing this, i know it wasn't easy. thank you for being you. i hope i get to meet you in person someday just to tell you how much you inspire me. you're such a lovely person and i'm so glad i get to exist at the same time as you. thank you for being so willing to spread awareness for your condition bc i find myself telling people about you just to help spread awareness for your condition as well. sending so much love and positivity your way! ❤❤❤❤
Sharing your story is so brave. Knowing how I felt when I was diagnosed with epilepsy last year I can't imagine what you are going through. You are loved
I'm glad you're still here and I really appreciate that you're willing to share this with us. You're such a strong person and a huge inspiration for me. Thank you for being here and I wish you the best
I know its not the same but it can be similar mentally and I related. As someone who wasn't diagnosed with borderline personality disorder until I was 25, high school and college was similar to me, I wrote a lot of similar diary entries from as young as 12. I also have quite bad phsyical health and have about 3 surgeries a year since I was 18 and its hard to feel understood from a young age. It's scary when you don't know what's wrong with you and when you started crying I felt your emotions so deeply that I cried with you. I'm so proud of how far I've come now and I'm proud that you have too 💜
Hi, Evie. You are so strong for re-reading your diaries and posting this! I cannot handle looking back at mine. I am also in the process of getting blood-work done for all my issues, as my de-realization symptoms worsen. Not knowing who I am is terrifying... but it's comforting to know that I am not the only who has experienced this. lots of love to you 💗
Oh hun!! I was with you all the way. I recently read my old diary from when I was struggling and man, it’s a definite eye opener. It was hard to see what past me was feeling but it’s good to acknowledge your younger self and grow! And you have definitely been growing, sharing, and helping people through you videos. You have my heart and full support!
Your so brave to go through all this, as a person who struggles with depression and severe anxiety, I know how hard it is to keep functioning and I just want to say that your videos (especially your baking videos) are always so uplifting and have helped me through some depressive episodes. Thank you for all that you do!
I've struggled with DPDR and that has been extreamly difficult, so I can't imagine all of what you had gone through. You are so strong!
I cant imagine how hard this must of been for you to share this, you're so strong and such a beautiful person, im sorry you had to go through this, thankyou for spreading awareness 💜
I'm only a few minutes into watching this however hearing about your experiences is already extremely validating. I was diagnosed with PANDAS/PANS when I was around 7 and everything you've said so far is so similar to how I've felt and things I've experienced over the past 13 years. I've only met one other person with it which has made me felt extremely lonely with dealing the condition so hearing someone from a different part of the world sharing experiences that are so similar to my own is extremely comforting; thank you for being such a strong advocate, it genuinely means the world to see someone spread awareness for something that has made me, and probably others, feel invisible
Thank you so much for sharing this even though it can be scary ❤️ this can be so so educational for people who may suffer with PANDAS/PANS but haven’t got diagnosed yet! Im so proud of how far you come ❤️ you’re the most amazing person on earth Evie I love u ❤️
i don't even know you personally, I've been following you since maybe 2019/20, and i can only imagine what you've been through and I'm happy you're still here, fighting and advocating, and i can tell you i love you so much on a human level, really❤
Thank you for keeping out the self harm parts. I've struggled with self harm for years, it first starting when I was 5 years old. Its related to poor mental health and mindset as well as depression and OCD. Its just terrible, awful, its like a living hell to go through and to unintentionally hurt the people you care about around you. Gosh I can't express how horrible it is and I hope anyone else dealing with it can get better💜
Evie, thank you for sharing. I know it was hard to do so. I could relate to a lot of what you wrote from times I was in a PANS flare and did not know what I had. I am so thankful you are telling your story and helping others feel less alone with this condition. Your advocacy for this illness is saving lives. ❤ Thank you!
I'm sure this was incredibly difficult to post. Especially with how personal it is. I want to thank you so much for posting it anyway for the awareness. I found you from your baking videos and have watched over the years but never really commented. Just recently my son started developing tics and having more knowledge and info from watching you, i feel like i was/am able to help him better. I'm so sorry you had to struggle but i am also SO incredibly thankful for all of your info you have shared. I wish you had never had to go through that. You are a beautiful person inside AND out and the world is such a better place because you're in it! ❤Thank you for being so strong, kind, knowledgeable, and caring!
Thank you for sharing with me and I know how you feel but you gotta be strong, sometimes it's hard to be yourself, but if you love yourself because I'm something. But I hope you be safe, stay healthy and be happy!
How brave of you to share these entries with us and for going back to them. I dont ever read mine because im afraid to see the pain from back then. Thank you for sharing this. ❤
im soo sorry it took doctors soo long to figure it out. im soo sorry you EVER felt like the world would be better off. thank you soo much for never giving up. thank you for sharing your journey even though its hard to talk about..
Also wanted to state that I am sorry you were struggling too.. Its admiration to you to share something so personal you're so very brave ❤😊
I feel the burden part. I have a few mental illnesses and ugh. They can be monsters at times. Journaling has helped me a ton. If anything, it’s gotten the feelings of helplessness out and let me organize what I wanted to say to my therapist so we could figure out a plan or we could catch a bad habit or trigger and figure out how to deal with them when they happen. It’s definitely not an easy journey and I’ve learned it’s not about being “fixed” it’s about living with it and figuring out each phase as you go. ❤ keep going Evie!
It is so heartbreaking to hear all that you experienced, especially considering how things might have been different with a proper diagnosis. You are so strong for sharing this and you are doing incredible things by putting yourself out there and sharing your journey. So many people know what PANS/PANDAS is now who didn’t before and hopefully it will help someone get the correct diagnosis in the future. I wish you the best, Evie. ❤
The hardest is thing to do is revisit the past. Hopefully when the tears and pain went away, there was some healing and you can let the past rest as it should. Thank you so much for letting us into a very private part of your life. I wish your younger self could have known that 656,000 people( probably thousands upon thousands more) like you. Keep your head up and FIGHT, FIGHT FIGHT. Good things are on the way, I can feel it. Until I see you again, be well my friend. We love you, girl!
Evie as a father of a daughter going through her own battles. I just want to give you A hug and tell you everything's going to be ok. I've been following you for a few years now you've made me laugh and cry. You are an inspiration to so many people and such a beautiful person. I thank you for sharing your life to us and opening our eyes. I wish there was more we could do. So I'll say if you ever need to just talk to someone I'd be happy to listen You might make me cry but I'll listen. Much love to you and your Mum and Dad and again thank you
Evie you are so important for the World to tell your life story ! You are Awesome best wishes from Germany ❤
Thank you for sharing this and raising awareness! You are such a beautiful soul and spirit!! I love watching your videos!! They are so educational. Your voice calms me down and puts a smile on my face!! I just feel so much love ❤️ this video had me crying!! I know what it's like to struggle with things and not understand at the time what is happening!! It's hard when we are struggling, and we feel we are alone!! Im glad you have such a beautiful and supportive community of people. I hope that brings you a beautiful feeling and so much love!! You deserve all of it an more!! ❤ :) your vibration heals me each time I watch your videos!! There's something extremely special about you its so beautiful ❤
I mean this from my heart, I love you and everything you do for this Earth!! Thanking your beautiful heart and souls creation❤❤
I’ve gone through mental health difficulties that weren’t from PANDAS/PANS but nothing like this. It horrifies me that you had to be misdiagnosed for so long. Thank you for being so vulnerable ❤❤
I myself find it very hard to reread old diaries as it can be extremely hard and uncomfortable to look back on such difficult times. Thank you for sharing your strength with us
I love you so much Evie! ❤❤❤ We ALL do! I cried so much durin the video right along with you. I just wished I could give lil Evie a big hug n to you now for how strong you are mentally n physically. A lot of what you read out of your diaries I’ve dealt with my whole life since I was 11 all the way till now… n I’m 39 now. Just want you to know we all love you SO SO SO much! 🥹❤
"I feel like I should burn it" This is so relatable, but it is also your testimony
Thank you so much for helping me feel less alone in this suffering, Evie. ❣ It's so important to talk about this horrific illness.
Oh evie this made me cry and never cry like this at videos . Heart breaking 💔 you poor poor girl . Your so inspirational sweet loving girl. You are amazing. Keep going girl xx
That must be hard to read your old diary you are so strong and brave to put your old feelings and RUclips
Oh, Evie :( I am so happy you made to through those tough years, I know we can't go back in time but by spreading advocacy you are helping bring awareness to this and saving a lot of children from going through similar struggles. It is hard and heart breaking, but you have such a positive impact.
When I was 10 years old I developed anxiety and depression, and not even two years later I developed tics and hallucinations. Now I have been diagnosed with TS and schizophrenia, but I am not being treated for it, or I guess the treatment isn't working. I still don't know if when I wake up tomorrow if I will be delusional or able to move, some days are better than others, and it is so so scary. I am in the US and my insurance is not great. I have been hospitalized in psych wards 4 times since I was 16, and in this past year I had to stay at a treatment facility for two months. I ran away in April and got kidnapped and was put into really dangerous situations without being aware of it. It is very scary, and I really appreciate you telling your story. I don't know if it is BGE or anything auto-immune, but I know that regardless of the causes, all of our struggles are valid and real.
Just to let you know, you are an absolute warrior, love you Evie.💜💜💜
oh evie, i was sitting here crying with you🥺 i can’t imagine going through what you’ve been through, your family and yourself are so strong and i’m glad to see you’re doing better. wishing you all the best ♥️
Your kind, brave heart shows deeply in this video. I'm so sorry you've had to go through all of that.
Evie, First off thank you. Thank you for sharing yourself with s and being open and vulnerable. When you share things like this I feel as though you have taken my memories and shown then to me. For years I’ve been on my own battle through anxiety depression ocd like symptoms and fnd which we now suspect are all PANS. If it weren’t for me finding you I would have never have known about this condition and I can bet I would be suffering for a long long time without any real treatment. You are so strong and so brave and have inspired me to be strong and brave as well. I know you are doing poorly and I hope better days are on the horizon, I won’t wish you better because I know how that feels when you are dealing with chronic illnesses but I do wish a low symptom day for you soon. Thank you again for everything you do.
Hope ur days going good too mate. Idk what it's like to have pans or fnd, i only have ocd, but mental health struggles can be the worst. Hooe u keep listening to the ppl that care about u, cus they're r many ppl out there that will listen. Anyway have a great night or day :))
Evie, you are so brave to be so open and vulnerable online in order to raise awareness. Thank you for that! I had no idea that things were so bad for you (I could only imagine, and was nowhere close to realizing the extent of your struggles), and this was very informative. I’m glad at the progress you have made since then, and for the diagnosis. I am also very glad that it seems you have had lots of supports in your life to guide you, especially your family. You are beautiful, Evie-don’t ever forget that!
I know I don’t have what you have, but I get the friends part. Whenever I try to join the conversation someone else starts talking and I don’t get a turn to talk and I know it might sound like not a big deal, but it’s not just that. I’ve never told anyone any of this, but I feel like my friends don’t actually care about me sometimes and they just feel bad, but for what, I don’t know. Again, I’m always getting excluded and sometimes at school I just stay quiet. And people wonder why I never talk.
Edit: Evie, I am so sorry for what you went through. It sounds so horrible, and I’m so happy that your at least a little bit better now, and just know that I might not know you, but I do love you and you’re an amazing person, and please don’t overdo it. If you need a break, take a break and I love you.
As someone who has watched you since 2020, it’s so amazing to see how far you’ve come in your journey. I had started watching you at the time because I have tics like you and seeing someone else with tics made me feel not alone but ever since I have came along to see you do such good things. Seeing you being misdiagnosed for so long to finally figure out that you had PANDAS was turn for the best in your path. This video was very informative of how much PANDAS can do to your life and how much it can impact it. I had cried a lot after finishing this video for the first time as I hadn’t had that much of an idea as to how much you had to go through in your past. I’m just so glad your here now and doing well and seem happy. Love your videos Evie and I’ll never stop watching!
Thank you so much for sharing this. It's absolutely heart breaking but I'm certain that because of what you're sharing, and the awareness you're raising, there's at least 1 person that has been spared from the suffering and misdiagnosing you've been through.
Thank you for sharing this. Grieving for younger you is healthy & natural. Remind yourself you have the correct knowledge now & can use this to move forward. I was unDX with several things all my life & have only found out the truth in the last 3 yrs. I'm 59 now. You are a truly lovely & caring person, just make sure to put a little of that aside for yourself.
Please don't feel bad for editing anything. It's your story, we have no right to know. Please don't burn these - they are a testament to young Evie. That's my opinion it is your choice in the end. Thank you again for reliving your pain to spread awareness. 💜
Thanks for your never ending honesty, Evie. I'm really sorry for everything you went through. Don't share what you don't want to share, you don't have to force yourself or anything. Do only what makes you feel safe and comfortable. Again, thank you. Lots of love and support!
Im sorry you have had to go through all that. You are so strong! and posting this is courageous and will help a lot of people, it will help people know they arent alone. And it wil. help people understand and learn more about pandas/pans. i hope things keep getting better for you. you deserve happiness and good health. You have a beautiful soul. Keep fighting! things will get better
You are such a BRAVE woman. You have no idea how much this could help others to not have to go through the years of torment you had to without knowing what was happening to you. I admire your courage and strength. You are a warrior.
I too suffer from depression.
Keep up the good fight. You are an inspiration.
You are loved.
You are needed.
Hugs
I love you so much Evie. Thank you for doing all you do to spread awareness for this disease. It's heartbreaking to listen to but it just shows how much this needs to be shown and that this is a very real dark disease. ❤❤❤
Quite scary how close this sounds to my early experiences of depression- started when I was 11/12. Sending so much love
As someone that has PANS this hit home. I wrote in a note book and had a bunch of letters I wrote to older me hoping things get better. Recently I started finding and reading them all. My heart hurt so much watching this. It helps feel less alone and understood. Thank you for sharing
Wow. You are so strong and so brave. It’s heartbreaking, but I’m so so glad you’re in a better headspace❤❤❤ In high school and college (and up until mid January this year) I had “panic attacks” that turned out to be partial seizures. Just last year i had a grand meal seizure and was finally diagnosed with epilepsy. The whole time I thought I had a panic disorder, when in reality part of my brain was seizing. This video is inspiring me to look back at my old journals too.
Thank you from the bottom of my heart 😢evie youre one of the best people i know for sure 🥺 its crazy because 2015-16 were my darkest years and i filmed myself crying a lot and i think im going to watch those video diaries, im better now, i have a scar on my wrist to remind me that i got through it ! All my love ❤❤❤
These videos are so helpful. I am currently teaching a student diagnosed with PANDAs. They're really young, and these videos are so informative and helpful. They're giving me some real insight into your struggle. You're a fantastic person.
Evie, you are honestly so strong. Your past self would be so proud of where you are today and how far you’ve come. Please keep going, your strength inspires me❤❤
while I don't have PANDAS/PANS/BGE, I've struggled with derealisation/depersonalisation as well as other mental health/neurological issues, and hearing your old diary entries reminded me of my younger self and how desperate for help I was. I'm proud to say that I've come so far and am doing so much better, and I'm so happy to have found you. I cannot even begin to describe how much you help and inspire others (including myself). Because of you and people like you spreading awareness about "less common" diseases I've learned so much and now I want to become a nurse working with children struggling with rare and/or chronic conditions. From the bottom of my heart, thank you ❤❤❤
You really have the best mum, she loves you so much ❤
this video has really opened my eyes to my own conditions. I never thought it mattered and i thought it was silly but seeing this video and the comment section opening up about everything that they are experiencing has made me realize i am not okay and i need to go to someone. I hope i can find some sort of relief eventually and not hurt at some point. Thank you for being so open cause it has atleast helped me find help. Thank you truly evie and thank you to the comments.
Evie you know that all of your fans love you and I care about you
I'm not sure why your video popped up in my feed but I'm glad it did. Don't burn your diaries please! They show you how far you've come... and who knows how many people this video is helping right now? I don't have pandas or pans, but I get horribly debilitating migraines... the kind that make me vomit, make me dizzy, hot/cold, can't stand lights, sounds, smells, and I've even passed out from the most severe ones with absolutely no advanced notice. I know the signs of those now, but it was absolutely terrifying the first time it happened. So many people chalk migraines up to "bad headaches". I wish that's what they were. When they worsened, I fell into a depression, because it took so long to bounce back and I was afraid to even get behind the wheel of my car, afraid I'd pass out, have an accident and die and possibly harm or kill others in the process. They're well under control now, but it was pretty awful for a while. All that to say that I'm glad you have a diagnosis now, and that you're in a better place. Keep the diaries though. Little Evie was stronger than she thought. Let her have her voice.
Your voice is so soothing, pure therapy. Hope you realize that you are such a wonderful person!
i feel really seen lots of this is how i’m feeling right now and it’s good to know it gets better
Evie we all love you so much ❤ This was so very powerful, and I too feel for little Evie that should never have had to feel that way.
Your family as well. It wasn't your fault, and though guilt is a cruel passenger many of us carry, I hope that enough of us all over the world can fill the holes of doubt. You are incredible, and the world needed a warrior to bring awareness of PANDAS/PANS. You are that warrior. And you are doing brilliantly.
Oh Evie!! This is such a horrible thing to go through, I understand the struggle, I’ve had and still have my fair share of them but PANDAS/PANS is a whole new level, much love to you hun, your so brave, strong, loved and genuinely unstoppable, hope your doing well at the moment ml 🥰❤️🩹
I can't tell you how much respect I have for you. Youve helped me SO much in the past few years. It's heartbreaking to see you cry. Gosh, you're so stroung and courageous, you are waaaaaaaay up there for me! 💜🖤💜🖤💜🖤💜🖤💜🖤
the amount of times you said "this was a pandas symptom" amazes me. ive been following your story for a little over 3 years now. and im still learning so much. i had no idea how many symptoms there were of PANDAS. when i first started watching u i had no idea what tourettes was and ive now been diagnosed with it for over a year. you gave me so much confidence to figure out how to help myself and i could never repay u for that. thank you :)
also, do u regret when you made your book? because i bought it as soon as it came out and i know you talked about your "fnd." now that you know it wasnt that do u wish you waited to make it? would u ever want to make another one?
much love
i’m so proud of you! i’ve been watching your videos for the longest time and i remember seeing how confused you were about your health but like you said all the pieces have fallen into place ♥️♥️♥️
If you don't burn it you could always keep it as progress that you've gotten better, as proof that you've made that progress. That's what I would've done with mine if the hospital had given it back
Edit: I've finished the video, and I should've waited to comment. I didn't realise how bad it could get and I'm so glad you shared this with us all. I hope to see your recovery and do whatever you want to those books, because that is very scary.
It also helped me realise how scary it was for my family when I was like that (it wasn't anywhere near as bad, but i did have physcosis and hallucinations, meltdowns, minor disassociation, and my 11 and 12 year old self had the graphic stuff as well, and was obsessed with never recovering and being in hospitals. Me and my parents were VERY scared, but i didn't know how bad it could be, especially since I don't remember most of it.
Thank you for being here and sharing your experience, you are brave. You are alive. And I'm proud of you for that. Once again do whatever you want with those books and if you need to delete my comment, please do so! I don't want anyone hurt.
I cried with you...
Espically when you said about crying with your mum about school and when your mum came in. My mum was also a Teacher in a SEN school in the same area as yours. There's just something about mums espically in the SEN world that hits different with me. When your mum said "we got through it, we got through it because we're strong and we were together." I was gone 😭...
I know how you feel on some of this and thankyou very much for sharing. I so wish I kept a diary but I just couldn't! I am waiting for a diagnosis - waiting for that moment, that I am so glad you had, of everything clicking into place. Thankyou again for sharing, I know it will have been supper hard for you to do this but thankyou for doing it. Sending you love as always.
From a fellow long time undiagnosed young person: i know its ironic when ppl say „wow you are so strong“ like yeah, what else am i supposed to do than keep on pushing and holding on? I don‘t wanna die so its all i can do.
But following your journey i really get where they‘re coming from. You might not feel that way all the time, but be assured, everything you do by sharing insight into being young with a partly invisible illness gives me so much strength and hope. It heals my heart. I feel not so alone anymore. You built a community that feels like a safe space. THANK YOU EVIE
You’ve been through everything, you are a warrior. I haven’t got what you have, but been lost like you and being through some health problems. Been feeling like myself again. ❤