my chronic illness story

of course i decided to record this on the day i got aligners so i have a slight lisp~
I didn't want to squick too many people out so I skipped some details, but a cursory google search will tell you what you need to know if you're interested in that kind of thing - please don't scare yourselves though. I also want to make clear my demeanor here isn't to make light of things in any way, I've gotten used to it so much that it's like talking about the weather for me honestly.
Music by:
Josephine Malí - Beyond the Reflection - thmatc.co/?l=D...
Josephine Malí - Remember the Rain - thmatc.co/?l=0...
instagram: @chai.tii
email: [e-mail]

[@Cat-pb7zj]

As someone who also has a chronic illness that causes me a lot of pain, it hit really hard when you talked about the part where doctors didn't believe you and belittled you, because that happened to me too. 😢

[@Tina.bina.]

I'm sorry for how long it took for you to get taken seriously and get a diagnosis. The medical racism that happens present day is so ridiculous. I'm really glad you were able to eventually get the help you needed. Thanks for sharing your story with us!

[@OriginsofSpirits]

My heart goes out to you, it really does - I have a chronic illness too that took nearly 10 years to diagnose (here in the UK!), and the pain and suffering and exhaustion of not being believed or belittled by the medical profession is almost as difficult as the illness itself - you almost get to a point you gaslight yourself. Being a woman also definitely made it harder to be believed. I am so glad you had your family on side and finally found good care with good medical professionals who care and are knowledgable. I wish you all the best, thanks for sharing with us!

[@ahoam]

This video came at a perfect time for me. I'm a black woman who's dealt with chronic pelvic pain for the last year. Doctors have thrown around a lot of potential diagnoses but there's been no further investigations to determine what is actually going on. I was about to give up cus I'm tired and constantly anxious about having to go back the doctors, but now I know I need to keep pushing for them to do something. Thank you💜

[@iriejones8292]

❤ go girl

[@chai_tii]

You've got this! I hope you get the help you need and deserve💜

[@Giovanna-rv3gx]

Watching this was very important to me as someone who has ibs (which is not nearly as strong as crohn's can be) and had to go to several doctors to get a diagnosis. But also as a med student, I'd like to be the type of doctor who believes in my patients' pain and listening to multiple stories is important for that. I've been following your channel for a while and I love all of your content, keep up the great work

[@FairyBogFather]

Thank you for sharing your story. I struggle with chronic illness as well and have been dismissed by so many health professionals. Seems like a right-of-passage (or perhaps just a constant battle lol) for disabled and chronically ill people. In high school, when I was throwing up blood, having debilitating migraines, insomniatic for weeks, and forgetting my name/how to do basic tasks, I went to a doctor who said I must just have anxiety. I can't remember if I tried to protest or not, I was so worn out that I probably believed that BS--plus I was so young, I didn't know how to advocate for myself, much less that that was expected of me. Anyway, after months of my symptoms getting worse and worse and doctors diagnosing me with anxiety and depression, I did put my foot down and decided to get tested for viral infection and diseases, since I wasn't getting answers anywhere else. The results came in and turns out I was basically dying of a rare disease. Thankfully, I was able to get treatment and am still alive today! Though, if doctors had taken me seriously and properly responded to the severity of my symptoms, I likely could have had this illness treated much faster, and wouldn't suffer from the chronic illness, chronic pain, and medical trauma that I do now.

[@GayHimbo]

Thank you so so much for opening up about this! I’m sorry you had to deal with any of this, it’s awful to consider how negligent those doctors were when you clearly needed help. I’ve also been bounced around and accused of lying by different medical professionals and came to a similar conclusion to just handle things myself because it’s so physically draining on top of being disheartening to keep reaching out and having your hand slapped away. It’s incredibly validating to hear someone else’s story about medical discrimination and gaslighting bc at times I’ve def internalized that and thought I was doing something wrong or it was all in my head. Let me tell you, the way so many doctors have changed their attitude and quality of care the *second* they find out I’m queer and need medical care for specifically queer issues has been bananas. This one doctor became visibly uncomfortable speaking to me and rushed me out the door in *10 minutes* with an antidepressant Rx I’d told them I didn’t want. I didn’t realize until I was in the parking lot that he’d cut my appointment short 45 minutes early and essentially denied me care. It makes me so angry that you had to be on the brink of heart failure to be recognized, but I’m glad that you did end up getting a diagnosis and treatment. I can’t tell you what it means to hear your words, but I really appreciate you sharing this.

[@isabelricker]

I already really enjoy your channel, but had no idea you had crohns! Thank you for talking about it; I’m in the process of trying to treat my Ulceritive Colitis / IBD and it’s always meaningful and positive to hear about others who are/have been dealing with it. Especially other women around my age, and those in the entertainment industry! Btw I also developed it junior/senior year of highschool but didn’t have it correctly diagnosed for another five years… being told it was just anxiety and stress was intensely disheartening and lonely

[@JaeDuh]

Thank you so much for sharing your experience. I am so sure I have a chronic disease but I am so afraid of talking to a medical professional for a lot of the reasons of how you were treated. I hope that stories like this continue to be shared and it makes a change thank you again

[@gabrielamonasterio6]

Thank you for making this video. I'd seen some of your older videos about it but confronting it head on like this is hard, and we appreciate it. Your story about finding a doctor who would listen to you really resonated with me. ❤️

[@hylianevie]

I’m glad that you were able to find help when you did. I also went through something similar when I was around 12/13 years old and I got sick one day after my birthday I kept dry heaving and no fluids would stay down I went to 4 different hospitals in my area and all of them told me I was fine and I was making it up. Eventually I ended up going to a doctor who only took appointments but they were empty that day so they took me in and immediately told me I needed to be in the ER so I was rushed there and basically I could’ve died if I hadn’t gotten help in the emergency room. I don’t remember what I’d gotten at the time that almost took my life but I do remember them mentioning to me that I might not have made it to the next day. I’m Mexican but I doubt that was a reason for them disregarding me but who knows I was in bad shape to notice much and at one point passed out so who knows 😅

[@urgeintheicebox]

Very cool of you to share this. The more we talk about our own health, chronic illness and disabilities, the more undeniable it will become for everyone in the United States that we require a single-payer, nationalized healthcare service that serves everyone's interests.

[@FlyToTheRain]

thanks for sharing!! i also have crohn's but its incredibly upsetting that you had to make four attempts and were on the precipice of heart failure before anyone took you seriously. i don't believe for a second that faking an autoimmune disorder is on the top of the list of attention seeking behavior for high school girls. here's my story: i was a junior in high school when i flared up for the first time. i had loss of appetite and then noticed that i was bleeding, but i myself didnt want to believe that i had some serious condition that web md suggested matched my symptoms so i just kept telling myself i was stressed. then i started to feel lightheaded walking between classes, that when i got to class i would collapse in my chair and chug down half my water bottle just to get oxygen back into my system and make the blackness creeping into the edges of my vision go away. i would come home every night and basically pass out still in my school uniform, then wake up some time after midnight, try to do as much homework as i could before putting on sleep clothes and going back to bed. it got to the point where it was the end of the semester and all final projects were due and i hadn't started any of them. i asked my mom to skip school that thursday (which was a first and therefore incredibly out of character) so i could just take the whole day to do my projects so i could turn them in on friday. she said okay, but only if she could take me to the doctor in the morning because of how tired and pale i was. went in to my pediatrician the next morning and gave lab work. then my mom and i notice a bunch of people scurrying around outside the door and then the doctor comes back in and is like, okay you are incredibly anemic. we considered calling an ambulance but decided that we trust your mom to transport you. you need to go right to the big university hospital ER. do not stop by home to grab anything, do not pass go, do not collect $200, go straight from this office to the university emergency room. they will be expecting you. turns out i was significantly more anemic than my mom who had a rare bone marrow cancer. more lab work, a bone marrow biopsy, colonoscopy, and probably same sort of mri scan with the gross liquid stuff you got, and i end up with crohn's disease. on the plus side all of my teachers excused my final projects and tests and just kept my grades for the semester as they were. cons were definitely steroid side effects and rapidly gaining back 20 pounds as a teenage girl while navigating what was in hindsight a traumatic experience overall. been under control for several years now but it really says something about how my life was going at the time when being hospitalized and immunocompromised was a bonding experience for me and my mom.

[@SadGyalSummie]

Thank you so much for posting this. I am currently experiencing this and have been falling through the cracks for the last 3 years. This made me feel less alone. Racial bias and Medical Neglect plays a huge part in so much of it it's so disheartening.

[@syd1982]

Thank u for this video... i also have an autoimmune disorder & am a Black woman & my process felt the exact same... yrs of seeing drs about my fatigue wit no conclusion until about a few yrs ago my dr happened to jus test for sumn that lead to an (albeit still nebulous) diagnosis & im finally on a track to wellness. I sumtimes harbor guilt cuz i didnt fight to get help sooner due to self blame of thinking i was setting myself up to feel bad by having "bad habits" in college of not eating or sleeping enuf, turns out those were symptoms... Also the last few mins r real, still in the mourning phase of who i used to be health & ability-wise, everyday is a struggle but there r better days ahead ! Blessings to u on ur journey fr & adding one more voice to the world of Black girls wit chronic illnesses 💚

[@chai_tii]

I'm glad you've made progress in diagnosis and you're on track to wellness! And thank you! I appreciate it~

[@contraband_queen68]

Thank you for sharing your story💖

[@InvisibleRen]

I got an “I Can Cure Your Chronic Fatigue If You Pay for My Program” ad. And ngl I nearly watched all of it. 😭 Anyway, I’m not done advocating, but there are times I really want to give up. The scariest moments are times I’ve fallen without anyone there or aware enough to help, or my legs suddenly stopped working in the middle of walking, or my entire body stopped working and I couldn’t even speak or swallow my spit. Those moments have me going “I have to get answers” but when answers aren’t given and I’m brushed aside, my thoughts turn to “I give up, even if it’s getting worse, it’s not like I’m dying.” It’s not only having the courage to speak up for yourself and your health but learning how to identify situations where you can speak up. There’s so many times lately where I go “Why did I stop when they interrupted me?” And the answer is Because I didn’t realize I could finish or repeat my statement/question.

[@chai_tii]

Oh no those ads 😬 I totally get that, even after diagnosis I've often thought "Why didn't I speak up or clarify?" It's an ongoing journey I think, but I'm glad you're not done advocating for yourself!

[@ace.of.space.]

oh also i just realized that your description of the time when you were skipping class to sleep and sometimes catch up on homework really reminds me of how my last quarter went... i have been poking around for some explanation for my fatigue and am waiting for some sleep tests and what not. but it made me feel like oh yeah, i do have a real problem and it is good that i have brought this excess sleeping and fatigue up to doctors. thank you again for being open about your personal struggles.

[@chai_tii]

Of course! I wish you luck in pursuing help as well. And thank you!

[@lizdustan7717]

This sounds exactly like my daughter’s journey to diagnosis. Hers ended up being colon cancer, but the dismissal from the doctors is the same.

[@chai_tii]

Ugh I'm sorry about that and that she's faced difficulty. I hope she's okay and I'm sending well wishes!!

[@wendys_lemonade2459]

thank you for sharing your story. I’m sorry that you had to experience that kind of mistreatment, but I’m glad you were able to receive a diagnosis. a former family friend of mine has Crohn’s disease and I was always curious about what it actually was, so I appreciate you taking the time out of your day to share your experiences.

[@foreveryoungnpb2111]

Wow I can believe it’s been 10 years. I clearly remember this time in your life. Way to go in sharing your experiences. Please keep advocating for yourself.❤❤

[@gloriaogara]

the health system in usa is so sad.... hope you are feeling better ❤️

[@kimberlyj1112]

🫶🏾 thank u for being open with us!

[@lewa3910]

Great video. More people in the medical industry in to take your issues seriously

[@ace.of.space.]

oh gosh hearing about the dismissive and disrespectful treatment you were getting from doctors just makes my blood boil. really glad that gastroenterologist finally did what all the other doctors were supposed to do, to take you seriously and properly investigate. it's awful how race and gender factor into this, especially how the pain of girls and black folks is disregarded. thank you for sharing your experiences.

[@elif8928]

thank you for sharing your story🤍 I have been to so many doctors because of my chronic stomach problems and most of them sent me home saying I must have ibs,and that I should reduce stress and eat healthy. I wasn't taken seriously,felt so alone and jealous of all my friends who were able to enjoy food without worries. It's so sad that some doctors don't try to listen and understand patients.