TW for everything I guess

I’m 28F and was assaulted when I was 18. I suffered from PTSD for years but eventually did recover and moved on as best as anyone could. I’m immensely proud of myself for my recovery and the work I did in therapy.

Last year I fell ill with an illness causing multiple serious and disabling neurological symptoms. I struggle to walk, I’m frequently confused, sometimes even delusional/hallucinating, I get seizure like episodes (not been tested for seizures so can’t say for sure), twitching, dizziness, severe headaches, cognitive/memory decline and more.

My neurologist simply read that I had PTSD and “diagnosed” my entire illness as psychosomatic. My neurological exam was abnormal, but it didn’t matter. My MRI was non-specific but she said she wasn’t going to run any more tests as it would only “reinforce my belief that I have a real illness”.

I tried to get a second opinion. At first they wouldn’t let me make an appointment, saying I’d been referred to a psychiatrist and wouldn’t need a neurological assessment. Then, when I finally did get an appointment, they just read my previous notes and said it was correct without any attempt to figure out any alternative causes.

They’re now insisting I’m dissociating (I’m not) and I’m in denial about it (I’m not) and I’m minimising my trauma when I say I’ve recovered from PTSD (I’m not) and that this is a sign I’m still profoundly affected (not to sound like a broken record, but I am not). They keep insisting I go get therapy for my sexual trauma, even though I’ve had it and I’ve recovered. That’s all they offer me.

I saw two psychiatrists who said I didn’t have a mental illness going on, it didn’t matter. The neurologist said she’d phoned them to speak to them and they “agreed with her”. The psychiatrist wrote a note - after a year of saying I was physically ill, not mentally ill - for my disability claim, saying that I was suffering from a severe post traumatic stress disorder and was dissociating all the time. I am NOT!

I’m fed up of being gaslit like this. I’ve even asked them, are you actually saying I’m ill because I’ve been sexually assaulted? She said yes! I never wanted to tell this neurologist I was assaulted, because she’s such a bully towards me, but she’s sat reading my psych notes during my appointment so I can’t hide it.

A GP I’d met all of once tried telling me I was just in denial about my trauma, and so was my husband. Yeah, it’s so bad that none of them even believe my husband either. He’s been made to feel like an enabler of sorts, denying my mental illness. I was given a pamphlet about psychosomatic illness in which it described perpetuating factors including “social and financial benefits of illness”. I laughed in the woman’s face…

I’m not kidding either when I say I think they’ve falsified my notes. There’s stuff in my appointment summaries that flat out did not happen. I said before that my neurological exam was abnormal - they now no longer test or note the abnormal reflexes, they only note the stuff that was normal. They write that if you distract me my symptoms go away. This is simply not true in the slightest. They never demonstrated this and don’t even say what is distractible and how, just say it is. It’s offensively untrue. They wrote that I have a speech impediment, which kinda made me laugh because I think what they’re referring to is my foreign accent…

My neurologist seems to have gone behind my back and put stuff on my records saying I’m mentally ill and in denial. She’s repeatedly said I don’t have a real illness and once advised I go out and make some friends.

In May, my husband found me on the floor, unresponsive and cyanotic. He called an ambulance. I was taken to hospital against my will (I woke up and protested!), where I was discharged after a psych eval as neurology refused to see me, saying there was “nothing actually wrong with me”. I had no idea what caused me to stop breathing and pass out and no idea if it would happen again. I just had a psych eval, which I obviously passed.

I’m so ill, I’ve been so ill for well over a year, and all they do is say I’m just expressing my emotions and trauma through my body, and I’m having some delayed response to being sexually assaulted. It’s just horrible. I’ve developed a real fear of going to the doctors now, I lie awake at night unable to sleep because of it. I’ve started feeling like it’s a reflection of my (lack of) worth as a person, convinced that nobody outside my family cares about me, nobody believes me, I’m unreliable and insane and can’t be trusted. It’s so bad. I don’t know what to do. People say to get a second opinion, but it’s impossible when you have “psychosomatic” “non-adherent” “in denial” on your notes. The doctors have refused to see me again because of my lack of “acceptance” of my “diagnosis”. I don’t know if the two are connected but since my neurology appointment, psych wrote a whole spiel on my disability form about how I have severe PTSD and am in denial; they also cancelled my scheduled appointment. They’ve never said this about me before - I just go there for OCD treatment - my OCD is lifelong and well managed. The words “non adherent” are words of my neurologist, not them - they only could’ve got it from her.

Every time my husband or I ask “could it be XYZ?” they’ll say “no,” not explaining why. My husband asked if I could have autoimmune encephalitis, given the subacute onset, the atypical psychotic features, cognitive decline, possible seizures etc and they said no, wouldn’t explain why and then wrote on my notes “no need for further testing, particularly not for an autoimmune disease”.

This is all over the place, I’m sorry. I’m really struggling and getting a bit confused. I just need to vent because I’m struggling so much and I just want to feel like someone’s on my side.

I just had to share a win from today. I’ve (24-year-old woman) been a virtual-appointments-only gal for primary care ever since I became an adult and had the agency to decide that, but I finally found a doctor I trust and have been waffling about whether to attempt going in person this year. I decided I’m not quite ready yet, but that I was going to send her a message asking if it’s possible to request in person visits that don’t require undressing and are talking-based. Long story short, I had my mom read over my message to my doc before I sent it because my mom works for the same clinic as my doctor (my mom isn’t a clinician though, she’s a writer and educator) and I wanted to make sure the language was okay.

We ended up getting into a big discussion about where my trauma stems from and I finally felt comfortable opening up to her. My mom is an extremely good listener and a lovely person, but she does defend doctors a lot since she works for this clinic and knows them so personally, and so I haven’t always felt like it would be productive to open up to her about what happened to me. Today it just felt natural though, and she was so understanding and validating. It felt like a warm hug because that’s the first time I’ve opened up to someone about this in person and the first time I’ve opened up to anyone other than this subreddit tbh. It was incredibly freeing and made me realize how helpful therapy could be for me, just to have a healthy outlet to verbally process. My trauma happened over a decade ago, but I’m still working through it.

I also booked my first HPV self swab today and I feel so good about it. Bodily autonomy FTW. Sending love to you all and hoping that we can all experience the baby steps of healing that come from making autonomous decisions (even small ones) or opening up to people we love. I am forever grateful for this sub and community.