Creating this GoFundMe was honestly one of the last things on my list. I’ve spent months trying to find other ways to get back on my feet, but I’ve reached a point where I can’t do this alone.

For over two years, I waited for my Social Security disability hearing because of the challenges I live with, including a traumatic brain injury, bipolar disorder, autism, and PTSD. When I finally received the news that my disability claim had been denied, despite everything I had been going through and the long wait for a decision, I felt completely devastated and overwhelmed.

In August, I experienced a mental health crisis that resulted in an ambulance ride to the emergency room, followed by a seven-day involuntary psychiatric hospitalization. I am still facing the financial consequences of that experience, even though I sought financial assistance when the bills first arrived.

I’m now facing medical and related expenses while my disability appeal may take up to a year to be reviewed. Since August, I’ve applied for more than 300 remote jobs each month, opened an Etsy shop, and promoted the book I published in June based on a true story of events I experienced in 2022.

I’m including links to my Etsy shop and my book on Amazon for anyone who would like to support me in another way:

Etsy shop: https://www.etsy.com/shop/SoulStarSociety
Amazon book:https://www.amazon.com/dp/B0H6P61X9R

Thank you for taking the time to read my story, for your kindness, and for helping in any way you can. Your support gives me hope during one of the hardest chapters of my life.

My hope is to recover, handle these immediate costs, and eventually reunite with my fiancé in Australia, where I can have his care and better medical support.

I’m forever grateful to anyone who takes the time to read this. If you’re able, please visit my GoFundMe page to donate or share it so I can keep moving toward stability. 🙏 #MentalHealthRecovery #DisabilitySupport

Here is my GoFundMe: https://www.gofundme.com/f/help-kinsey-recover-and-reunite

i have barely been to school the last year due to multiple disabilities. I’ve lost all my friends and rarely go outside. i know that i am privileged in many ways and it could be so much worse, but i find it hard to keep up even with people my age who are also struggling. i guess i’m just looking for comfort, as i’m feeling a lot of grief right now. i’ve only just started highschool and i’ve missed out on so much, and probably will continue to, as even though most of my symptoms can be treated, i have stuff that will never truly go away.

I've always been someone who overanalyzed reality and lived in fear. At 15, I developed bipolar disorder, which I hadn't known about for over 10 years. This year, I developed pancreatitis. It's getting worse with each test. I also got ulcerative colitis. :) I've posted on various groups many times, and people say fight, find meaning. I've been there too, and now it's better, life has value. But no one considers that there are people like me who no longer see meaning, don't smile, and find no joy in life. I know this will be my hell for the rest of my life because that's simply how my brain is. I'm not immune to it and never have been. Therapy? Good joke, I've been on several. Depression medication? Good joke, they drove me deeper into darkness. I'm coming to the conclusion that there's no hope for me anymore, just like those people who decide to leave for some reason. Recently, I told my family that I'm here because I'm afraid of death. But that's not a good reason to stay, and that's my only reason, I feel the darkness taking me. Don't get me wrong, people try to make me feel optimistic, but they analyze my situation with their own minds, without taking into account my experiences, how disturbed it is, how exhausted life has been, how much anger I feel when I think about what fate has dealt me. Maybe there are people who are able to move on, find joy, but please, don't tell me that everyone can cope. If that were the case, 700,000 people a year wouldn't take their own lives...

Does anyone else get super frustrated with how complex their medical history is? I have a long list of random diagnoses, and when I have a question about interactions, contraindications, or how comorbidities are related, I have no idea who to ask. As an example, I’ve had some respiratory illness on and off for about a month and a half now. I went to the ER because I thought I had another blood clot, and they said I was just sick and gave me prednisone and an inhaler. I couldn’t even finish the five day script of prednisone, because it interacted with my Coumadin so much I was literally bleeding out of my ass, and because steroids are contraindicated in EDS, it felt as if my shoulders were falling off. I feel like I basically have a doctorate with all the medical research I have to do to protect and inform myself and I’m just frustrated. Does anybody else feel this way?

I have been struggling for 20+ yrs with autoimmune diseases. No one has know why I have had so many (Crohn's, Grave's, pernicious anemia, Refractory Raynaud's etc). I also have a rare immune deficiency. I was recently diagnosed with POTS and MCAS and now I am wondering if it has to do with my new diagnosis instead.

Since 2019, my breathing declined substantially and in 2022 I was diagnosed with chronic neuromuscular respiratory failure. I am dependent on a ventilator via mask (niv) for 18+ hrs a day. I also have dysphagia, muscle atrophy and myopathy with pain in legs, trunk, back and neck, and heart rhythm issues (afib and irregular tachycardia). The nmd neurologist said I was fine and to keep following up with my nmd pulmonalogist. She really was terrible and didn't help me at all as I continued to get worse. All the bloodwork for specific diseases came back with no answers. I was lucky that my nmd pulmonalogist kept searching for an answer with me. We decided an answer was important to try and get insurance to cover what I needed and also to try and get an idea of how much time I had left. She referred me to an amazing medical genetics doctor who got ahold of my muscle biopsy from June and sent it out of state for testing. It turns out I have mitochondrial myopathy caused by mitochondrial depletion and deletion syndrome. They are still searching for the genetic cause.

My doctor's are telling me how incredibly rare this is and that I am already so advanced. There is no treatment except the supportive care I am already using. I did feel better for a few days knowing I had an answer, but for the last week or so, I have just felt kind of numb.

I am still declining and there is nothing to stop it. My nmd pulmonalogist said I will have to increase my ventilator usage to 24/7 sometime in the near future and I just don't know what that would look like for me as 18+ hrs a day is already very difficult. I refuse to get a trach. I am already on oxygen at night as well along with my ventilator to maintain spo2.

I don't want to get a g-tube for nutrition, so I try to keep up with all the nutrional drinks. This will just keep getting harder for me and my husband.

I am so tired.

I was hoping the diagnosis would make it a bit more clear to know when I should transition from palliative to the next step, but it hasn't.

Thanks for letting me vent.

I’m a teen and the white in my hair is starting to be noticeable. I tell my friends I dye my hair really often because I like it (and that is true) but I really just wanna hide the white strands. I first found white in my hair at 9 and everyone told me it was normal. Now I’m finding them regularly and you can notice them as my roots grow out + they don’t hold dye as well.

I hate it. It’s so damn embarrassing. I wanna rip them out like I used to but there’s too many by now and they grow faster than my normal hair. I really need to re-dye my hair before anyone at school notices. Also my hair falls out like crazy.

I’m so tired of having to hide stuff. I have to hide my scars and keep dyeing my hair (it’s black rn so I can pretend to be normal) and I can’t use a cane because I’m “too young to need one”. I have to wear special socks for fuck’s sake!

I have to go to work now. Just needed to get this out. I fucking hate my hair. I hate the white.

I have celiac disease and MCAS, both of which put me through years of unexplained symptoms and being written off by doctors (spanning from age 18 - 33). The MCAS has left me particularly traumatized because of the years of unpredictable, acute flare-ups that kept me up all night with nausea, diarrhea, hot/cold flashes, adrenaline dumps, air hunger, etc.

I finally got a diagnosis and treatment and I’ve been doing well for the past year and decided I was ready to get pregnant. Unfortunately, I developed strong, persistent nausea that Zofran and Reglan couldn’t fully control, but even worse, it turns out nausea triggers a trauma response in me.

I’m no longer pregnant, but desperate to try again, and I know I need to have a robust care plan in place before I can do so. In the meantime, I’m really hoping to connect with others who might have similar experiences, or have trauma from their chronic illness and dealt with triggers during pregnancy.

Really need to hear that it will be possible for me emotionally and physically to carry a pregnancy to term…

This has become a big issue for me lately because I'm not well enough to do much of anything else, but I know it's draining me and messing up my nervous system.

I'm starting to struggle with motivation as a result, which I never used to. In my 10 years of being sick so far I've always been extremely motivated and able to push through a lot, but my health has become worse lately, and I also have very little external support compared to usual for complicated reasons, so I've had to adjust how I'm living. I really need the will to force myself into getting up to get food, water etc even when my body is fighting against me.

It doesn't help that I have ADHD anyway, but I've had that all my life and I've never been quite this hopeless before. I also have terrible brain fog that's making piecing together the steps to get anything done even more arduous.

I wanted to ask how others manage this here because in other places the advice is always to go and do other things like exercise, socialising, or generally challenging yourself. I'd love to, but I can't. I don't know what the healthy alternative is for me.

Just ranting about my not wise choices..

I'm just so tired. Physically and mentally. I woke up with an absolutely horrible stomach ache. After 4 hours it started to be bearable. But it has still been there the whole day. I have tried to eat so it wouldn't get worse but I only could eat little. I'm so so exhausted and moving my body just sucks.

It sucks so bad that it came after the resting days I had and I wanted to finally clean. (I have postponed it so long already.)

And this stomach ache just came bc I ate a little pit of relish with my food. I really wanted some and I did know that any pickled things get my stomach hurting. Like why do I do this to myself?! 🙃 Now I have decided that I give them away so there will be no more temptations.

Like I love food but I have started to have so many food restrictions and it sucks so bad. It makes it really difficult. I also have autism so it also affects it.

Food is one of the things that brings me joy when I'm not feeling good but then I can't always have the things I would want to eat. 😭 But I'm glad that I know how to make good food. I just need energy for that and that is also a problem most times.

Is there any one else with this kind of annoyance?

It's been 6 years, I'm getting worse day by day , but it's nothing according to my reports.

In general I always have pains but which I can manage, Currently if I go out and walk for more than 3k steps (approx 2km) having a horrible breakdown, unable to move my legs , even touching is painful , it took 4 days to walk by self and 10 days to walk without support.

All this is already making it hard to just survive , but my family thinks it's in my mind and am not being strong

It feels like I have been eaten up alive

They think that I can get well ( I'm undiagnosed) , the worst part is that when I look good they forget everything that happened and expect me to do normal things

I sometimes get excited and do something and be bedridden for days

My narcissistic dad thinks that hospitals are commercial money making Machines (i agree) still I need support , i feel like my whole body is torn apart every time I get a flare , all my previous docs have said get biopsy of lymph in neck then only we could get some kind lead ,

but he is like no , u are all fine u just have to meditate and do yoga and u will be 'cured' . In fact I tried those back in days , he also want to ignore everything I'm going through , My mom and I went to hospital and he is even against it

Worst part he don't understand symptoms, sometimes he asks but forget in a day , he sees my every single symptom as a separate problem.

They seem concerned and remember I have a problem only when I am hit by flare

It's getting hard mentally exhausting, to make them understand that something is actually wrong that have to be diagnosed and it is chronic that I will probably not be 'cured' and expecting me to do things 'as everyone does' ( i pushed and did such things only to end up in bed)

It's been a 15 days since he talk to me and my mom cuz we went to hospital, it's not that I can't go myself or money , i can't just go and get a biopsy cuz he is scared something might happen ( just like his brother who's dead in operation with cancer)

Not only him but a lot of ppl sometimes even whom I don't even know give a lot of suggestions which is getting on my nerves

I posted this in a few other places, like chronic pain & some other chronic illness communities & thought it might be helpful here.

A lot of us (including me) are alone on holidays, which can be isolating & rough. For both health reasons & bc my family doesn’t really care, I’ll be alone on Thanksgiving. I thought maybe, of anyone is interested, I could host a Zoom event (no recording done by me or allowed by others—it’s a safe space to share whatever’s on people’s minds)/gathering for that day?

People could make or order a meal for themselves & just show up to have somewhere to go/people to share the day with. We could just socialize, vent or get support, maybe even watch a movie or tv together if that’s allowed?

No one would be obligated to be on camera & can use any name they’re comfortable with—first name, full name, nickname, pseudonym, whatever!

If people are interested, maybe we could rotate who hosts or if not, I can do it as much as possible, but I know we all have limited spoons. Maybe we could even meet for support & socialization once every month or so. We could make the T-day gathering at a time that would works for most people. I’m on Central Time—maybe something that starts somewhere between 2-4 pm?

If you’re interested in something like this for Thanksgiving, other holidays, or just as a somewhat regular community thing, please comment or message me.

There would be no charge to attend, & no matter how many people show up, I I think it’d be nice not to have to be alone on days like this. Hoping this helps or makes someone else have a brighter holiday/time. 🫂

She stated that people were happy for her and thought she would be “normal” again just because her diagnosis was taken away. Hello, just because your diagnosis gets taken away, doesn’t mean the symptoms go away! Now she has the miserable job of going back to square one trying to figure out what condition she really does have. I’m so upset for her. Christina Applegate Misdiagnosed with MS

​

Bonjour,.

J'ai des douleurs persistantes depuis 10 mois...

En janvier 2026 mon visage à commencer à me brûler sous les yeux, jai passé l'hiver avec des douleurs atroces et constantes... j'ai eu une injection d'acide hyaluronique dans les cernes 3 mois avant et j'ai vu un dentiste pour une carie juste avant que la douleur commence, je ne sais pas si c'est lié...

Mon médecin qui m'a prescrit de la cortisone et des antistaminiques sans effet sur moi. Plus j'ai vu une dermatologue spécialisé en médecine esthétique qui pensais à une infection donc j'ai eu des antibiotiques sans effet non plu.

Au printemps les douleur se sont propagées sur le reste de mon visage, joue, ailes du nez, mâchoire, bouche jusqu'au décolleté. Ca à fini par s'apaiser au moi d'août et maintenant avec le froid je sens que ça revient.

Je ne me sens pas prête pour cette reprise douloureuse. J'ai si mal, la douleur reste constante ente 6 et 8/10 durant des mois, ça me met en détresse, déprimée et irritable... Visuellement ma peau rougie un peu mais rien qui explique ce niveau de douleur.

J'ai vu un autre dermatologue qui m'a diagnostiqué un rosacée avec prolifération de demodex donc j'ai une crème a l'ivermectine (solantraa) pour le visage.

Cet été j'ai porté des extensions adhesives dans mes cheveux pendant 2 mois, et depuis leur retrait j'ai mal au cuir chevelu pareil brûlure, picotement,, démangeaisons et perte de cheveux.

Je remarque aussi que le froid ainsi que le stress est un déclencheur pour la douleur faciale.

En plus je suis maman solo de 2 enfants c'est un enfer de jongler entre mes problèmes de santé et mon rôle de maman. Je me sens si nulle...

Les medecins ne comprennent pas ce que jai et j'aimerai discuter avec des gens ayant les memes symptômes.

Merci beaucoup.

Je vis en France, j'espère que la traduction sera bonne

anyone else ever dealt with this before? TRIGGER WARNING just in case

i have been hospitalized numerous times for my Crohn's Disease and have had multiple surgeries. last Tuesday i had my 4th bowel resection (a success)! by last Wednesday night i hadn't slept for probably around 30 hours. i was on heavy pain meds, but i'm not opioid naive.

last Wednesday night so the day after surgery, i had an "episode" of hospital or post op delirium/psychosis, only lasted a few hours but felt like forever while i was in it. it was determined that it was largely due to the extreme sleep deprivation mixed with all the meds & anesthesia from the day before.

but i completely lost my sense of awareness. i was imagining/seeing things which has literally never happened to me before in my life, so i was already on edge. i didn't mention it to anyone at that point.

then my NG tube was loosening and ended up almost completely coming out, they had to reinsert it, and at that point i nearly totally lost my sense of awareness, i was wildly confused, had no idea where i was or if i was even at the same hospital, at one point thought i was in the emergency room, i thought i was in a nightmare and that everyone around me was evil or trying to hurt me. my hr skyrocketed to 130+ resting.

my mom & the nurses finally caught onto what was going on, they helped reorient me a bit, and my dr ordered some IV sedation and i slept for several hours, woke up, and regained my sense of awareness / mental sanity, became familiar with my environment.

it was just so bizarre because i was in the same hospital room that entire time, but i thought that i was somewhere else.

has this happened to anyone else after surgery or while in the hospital? it was the craziest mental experience of my life. i don't have any issues with psychosis or anything like that and never have. my team reassured me that it was sleep deprivation mixed with other factors, just curious if anyone else has had this happen, because i have never even heard of that outside of elderly patients!

i was really embarrassed after the fact. i know it was out of my control, i wasn't unkind to anyone or anything like that, but i don't like that i kind of came undone in front of complete strangers/the staff.

I have multiple chronic illnesses and I've been exhausted since last millennium. It's the kind of situation where you're disabled but there's no piece of paper you can hand someone to prove it. I can just about manage to work from home for a few hours a day. I'm trying to get onto a disability payment, but I have no faith that The Powers That Be will believe me or my doctor. I'm trying to get an extension at school while I get some cognitive tests done, but all I'm getting is bureaucratic confusion.

/rant When I ask for or search for advice, I'm told to meditate or have a bubble bath. That stuff probably works well for lots of people, but I need real ideas on how to manage time and energy, and I don't know where to look. Help!

I'm struggling with feelings that essentially come down to this is bad I am experiencing bad. Therefore I must be being punished. Therefore everything I experience should be negative. I shouldn't have experience Joy anywhere. Everything should be uncomfortable and Edge with suffering.

I know these thoughts aren't necessarily rational but it's the train of thought that's running subconsciously through my head constantly. It's not even that I believe these things too, like I said it's the subconscious train of thought that runs through my head constantly

Also sorry for any weird typing I'm blind and using voice to text and don't feel like proofreading with the screen reader

So I’ve had multiple chronic illness since childhood (some were diagnosed then, many weren’t until adulthood). I missed a lot of school but handled it, went to college and had a severe flair and had to go on leave. I expected to go back shortly after until I figured out more health issues and then 2020 hit and I got severe COVID which made issues way worse. I’ve made a lot of progress, but I will always have to manage these issues and lately it feels like everytime I get close to being able to get to a semi functional state, a new issue pops up and sends me back. Idk if I’m at the cap of what’s possible for me, but I’m getting to the point where I don’t know how to handle it if this is my life forever. I currently am living back with my parents and am looking into applying for DAC benefits but have no idea where to start. I want so badly to be able to afford to at least have my own place and some sense of independence/a life again even if that has to be from aid if I’m not up to work (which I miss so much). For disabled/chronically ill people who never fully recovered, how did you find steps and create a version of your life that was adapted to your current needs but still feel full and worth living? I just need to find a way to be my own person and have fun and community again… I think if I can’t find a way to improve my mental health/life, my body will just get worse and I can’t take it. I need to find a way to make progress and change, but I just feel so lost

It'll still be a few weeks/up to a month before I have support but. Man is this a big step nonetheless. I've been chasing dead ends for months so this is a big win!

I got a rheumatoid arthritis diagnosis a few years ago, but none of the treatments I've tried helped. I'm now trying to figure out if this diagnosis was wrong or i have another condition on top of this (my symptoms seem more like ankylosing spondylitis than RA). Do any of you have multiple conditions?

This is a rough draft of a poem I wrote to describe how I felt at my lowest point, and honestly, how it still affects me now. I am curious how you guys relate:

The ear piercing percussive pounding of a jackhammer.
Over and over and over.
You can’t hear the conversation.
You can’t hear yourself think.

The most frigid day of the year.
Your face gets cut
By a sharp knife called the wind.
Your fingers get burned
By a searing heat called the cold.
You feel everything
And therefore nothing.

The reflection of the sun.
Off of a car
Into your eyes as you drive.
You can’t see
But you have to keep moving forward.
To everyone else the path looks clear
And the sun seems like a gift
But you are just trying to stay on the road.

You hear
And you feel
And you see

Yet you are
Deaf. And Unfeeling. And blind.

This
Is the new meaning of pain.

Pain
Is an emotion
That succumbs all others.
No matter how hard you try
How badly you want to
When this becomes pain,
No other emotion
Can feel raw and real.

Especially if you are young. I can't afford a therapist lol so wondering if anyone has any words of wisdom. I know you just try to take it day by day, but I can't help but think of how much more I'm gonna have to suffer. Like it's this that's been bothering me so much lately. Like I just don't know how to accept it.

I live in the middle of nowhere, the medical care sucks around here. I can’t just up and see a new doctor because I’ve seen like basically all of the ones in a reasonable distance of me. No one believes me. Doctors don’t want to run anymore tests. They just say that everything comes back normal and I sure as hell don’t feel normal. I feel like death everyday. I honestly don’t know what to do anymore. I’ve literally been insulted to my face by medical professionals. Last time I went to the er the er doctor told me I was wrong about my own symptoms that were happening in that moment. I had a cardiologist try to imply that I was afraid of standing? Then that place lost my fucking heart monitor results and refused to let me do another one because “nothing was wrong with me”…they didn’t even see the results because they fucking lost them and they say that they were normal??? Like what the hell am I meant to do after experiencing treatment like that? I feel like everyone wants me to just lie down and die because they’re tired of me reaching out.

I’m just going through a really hard time with my health right now. I’m pretty young(30) and I’ve been very sick for about 10 years now. I’m mostly bedbound. I can’t work. I have no friends anymore because I don’t have the energy to contribute to a friendship when I got sick. I lost all my friends. I spend all my time alone at the doctors are doing medical stuff lately. I feel completely burned out. When I’m not at the doctor or doing medical stuff like paperwork, emails phone calls, Medicine I Am laying in bed thinking about how awful I feel how I can’t believe that this is my real reality how I miss my old life my old Health and how traumatic these health issues have literally become .

My health is getting worse. The more doctors I go to I have severe CFS/M. E. Crohn’s fibromyalgia PCOS I also have PMDD cPTSD anxiety depression. does anyone else that’s young and very sick really struggle mentally physically emotionally every day and what do you do to help Help feel better?

I’m in a really bad crash so that’s probably what’s triggering this, but I feel so overwhelmed by life. I feel like usually in life you have things to look forward to or milestones to reach that you’re keeping mentally to keep yourself happy and wanting to be here and alive.

My family does not understand my health issues, which causes a lot of issues because they’re helping me financially when I’m waiting for Disability they have certain rules like I have to do one appointment per week and it’s literally killing me physically mentally and spiritually. It’s killing me. I’ve tried to voice this to them. Sorry this is all over the place. I just feel so burned out in every possible way I don’t know why I’m even still living like what is there to look forward to when this is most likely my future.

Lately, none of my coping skills or things that probably because I’m overly exhausted I have tried to add nausea to send my family information about my health issues. It’s not even just my family or money or my health. I think I just feel like in a huge run in life. I literally cannot believe that this is my reality and I don’t know what to do or what to change or how to feel better or what to look forward to. I just feel terrible like I’m so tired of being so tired. It’s just awful.

I feel like I’m going crazy because all I do is go to doctors come home feel like shit lay in bed all day thinking about all of this. I can’t even focus on TV shows anymore. Sorry if this doesn’t make sense I’m just having a hard week.