topic Re: Missdiagnosis wasted years in PTSD and trauma

Missdiagnosis wasted years

SadboiArt — Mon, 06 Apr 2026 09:39:17 GMT

TW: Medical gaslighting, malpractice.

I have had every diagnosis under the sun it feels like. There are days when I look back with disgust at the treatment I have endured. All because I kept getting unlucky with GPs, specialists, phsycs you name it!

I'm here to complain about it in ptsd and trauma, beacause these are 2 that were correct. And they heavily impact where a treating professional might decide to look.

Getting access to care when you are mentally ill is near impossible. For me it has been at least. My entire life I was treated like everything was in my head.

At one point, I was experiencing extreem halluscinations and voices. I spent 8 years being missdiagnosed with schizofective dissorder, when it was black mold poisoning. Like I said it was! I couldn't get a single GP to take my mold theory seriously, and I was too unwell to argue.

I ended up needing a cane to walk for around 3 of those years. And it wasn't until I moved to a dryer town that I started to see recovery. I no longer see things, hear things (like that anyway, I have something else going on that is way less intense, pretty sure that IS the trauma) nor do I need a cane. Absolutelty furious at the wasted years.

I spend the majority of my 20s being told I had BPD when it was actually Autism.

I have been told it's stress, when it was Endometriosis, that I don't want to get better when I asked for a second opinion. One fool tried to say I had some other personality dissorder? I can't recall the actual name, but it was actually CPTSD from a childhood of multiple traumas and unmannaged ADHD.

Having so much trauma and PTSD means that a lot of my ailments get dissmissed until I need surgery and then the people go "oh, I guess you do have an inflamed apendix, oops"

I hate the medical industry, and I hate being human. I can ask nicely, scream it, cry, but no one will hear me for I was born female and I was abused as a child. Therefore "it's all in my head" they used to have another word for that ... hysterical. Nothing has changed.

I can't even tell a GP about being trans without at least one of them blaming my past sexual abuse as a "reason" for my transness! Are you serious mate? I was trans long before some man decided to put his hands on me. What is wrong with everyone? Why are these "professionals" so ill equiped to treat anyone beyond a broken bone? This is a rhetorical question, I know the answer, I'm just angry.

Over it. Giving me more PTSD honestly.

Re: Missdiagnosis wasted years

moody-_ahhhhh — Mon, 06 Apr 2026 12:18:07 GMT

@SadboiArt i hope u can find a different GP that respects you for who you are rather than plays the blame game, and wishing you all the best with future treatment

Re: Missdiagnosis wasted years

Eagle Ray — Mon, 06 Apr 2026 13:58:35 GMT

Dear KaraArtist,

I profoundly relate to so much of your post, especially the medical gaslighting. I have a trauma history too and developed fibromyalgia and chronic migraine at 13. Fibromyalgia is seen by most doctors as an unreal condition and that anyone with that label is a pathetic malingering hypochondriac. I'm 51 now and I've spent 34 years dealing with literally abusive behaviour from doctors. Because of the fibromyalgia diagnosis I have repeatedly had other medical conditions ignored. It took about 5 years to finally get a doctor to run further tests that found I had an autoimmune liver disease that was really affecting my health, because previous doctors didn't believe me and told me I was wasting their time. And this is when I was so respectful towards them. I've had a GP be nice to me until he learned about the fibromyalgia, upon which he totally changed, through a packet of pain meds at me (literally) and said "get over it". I had a physiotherapist become really abusive after being friendly for the same reason. So I feel just like you in this way and I also hate the medical industry for an endless stream of horrendous failures, not just in relation to myself, but gross cases of medical negligence that led to serious harm to family members. So directly from personal experience I am with you in solidarity and I also have actual PTSD from the medical system itself, along with the CPTSD I already had from childhood.

So having just vented myself there, I can share that what has helped me is taking full control of my own situation, and I expect you've done something similar. I do my own research, read peer reviewed journal articles, listen to podcasts on the mental and physical health issues I have etc. I also have Mast Cell Activation Syndrome which for me causes huge problems with histamine intolerance, but it can also contribute to reactions to mould. So I know that feeling of not having doctors believe you at all. Most doctors know nothing about MCAS and haven't believed me, but I have a hormone specialist doctor now who does and says she has really learned about MCAS through the info I have shared with her and now is able to help her other patients with the same issues. So some doctors are good, and some mental health professionals too, but finding them is extremely difficult, painstaking and exhausting. You want someone who is genuinely collaborative and open-minded.

With mental health practice too, there are too many assumptions made, like your incorrect BPD diagnosis, and I really feel for you that you've been through that. I find the DSM that's used for diagnosis is problematic in a lot of ways. My most recent diagnosis is DID which is often misdiagnosed as BPD, bipolar or schizophrenia. Fortunately my current psychologist was open-minded enough not to assume I was psychotic and has been understanding about it. But I have had some very bad therapy experiences in the past as well.

I understand how incredibly difficult it is getting the right help. I have found perseverance is the only way I've gotten through. I have found good people in the end and it's actually been by doing a lot of research first and then seeking out practitioners experienced in those areas. It would be great if you could work, for example, with practitioners who really understand being trans. I just had a look and found a website called TransHub that provides support and a "Find a Doctor" option, that may be helpful for you. Take care and listening if you need to chat more.

Re: Missdiagnosis wasted years

therising — Tue, 07 Apr 2026 06:04:19 GMT

Hi KaraArtist and a wave to Eagle Ray🙂

I believe the best GPs and specialists are the wonderful ones (full of wonder), as opposed to the ones who typically consider what appears to be a textbook case of _______. While every patient holds the potential to be a teacher and every condition holds the potential to be a teaching experience, I think some doctors or specialists just aren't open minded enough to learn in some cases.

It's frustrating to say the least and even angering when the only way to get an accurate diagnosis in some cases is out of sheer desperation and utter despair. When we can no longer tolerate what we're experiencing and set out to seek a 2nd or even 3rd opinion, it can cost time, money and our own sanity to some degree. Some cases of what we experience really can take us to the brink. Through such experiences we finally learn to stop settling for the wrong doctors/specialists and the wrong diagnoses. Through such experiences we learn to trust ourself a lot more too. Instinct or intuition can be a far more effective when it comes to making progress at times.

KaraArtist, my heart goes out to you with you have met with so many of the wrong kinds of doctors/specialists.

Re: Missdiagnosis wasted years

SadboiArt — Wed, 08 Apr 2026 07:09:19 GMT

Me too moody, the sea of useless drs awaits me haha

Re: Missdiagnosis wasted years

SadboiArt — Wed, 08 Apr 2026 07:18:42 GMT

Thank you for sharing Eagle Ray! I don't know if I feel better or worse, seeing I'm not the only one haha

I also suspect MCAS, but wish me luck finding a dr who will entertain that idea! And any other of my symptoms that get ignored.

I know that the medical industry gets better with each new generation, but that still leaves me open to abuse, missconduct, malpractice and neglect.

And you are correct, I deep dive reasearch into every new gp. I even go so far as using AHPRA and other registered medical sites.

Transhub has been amazing. Unfortunately, I seem to pick the drs who leave and stop practicing medicine. Because they're sick of it too! I had an amazing GP for about 2 years. We made so much progress. He left to work in a different field because the system was wearing him down. Devistated to say the least. Lol

I am exhausted. But glad to have somewhere to talk about it and hear the stories of others.

Re: Missdiagnosis wasted years

SadboiArt — Wed, 08 Apr 2026 07:27:43 GMT

Thank you for the support Therising. I agree, the best dr I ever had (who I made mention of in my response to Eagle) was always interested in researching, figuring out what was going on, and super respectful about memtal health and didn't assume that mental health was the only answer. Or that maybe mental health was bad BECAUSE I'm unwell. Logic seems to evade most people when they think your mentally ill. That gp was the best, i miss him.

I try to give every GP the benifit of the doubt, because they're people too. But they spend 10 or more years studying this stuff, I at least expect them to try.

It can be especially challenging if one of the bad drs decides to put you on their secret list for hysterical women (trans man things ignored) i spent a lot of my 20's fighting that sort of judgement.

Now if any dr tries it on, I am blunt, to the point and will not stand for it. I know how to report drs now and I will not be silenced any more. Mwahaha

Re: Missdiagnosis wasted years

SadboiArt — Wed, 08 Apr 2026 07:31:30 GMT

Also apologies for those who responded before my profile name changed haha i made this account before I knew I was trans. Kara was giving me dysphoria 😉

Re: Missdiagnosis wasted years

SadboiArt — Wed, 08 Apr 2026 07:39:17 GMT

@Eagle Ray ooo I just figured out how to ise the @

Anyway, your story resonates with me a lot. Especially the fibro being taken as an excuse to ignore your medical needs.

I cant find a dr who will alow me access to decent pain relief, so I often suffer in silence when a 10 migraine hits or a severe fibro flare up happens. There is little I can do outside of continue the hunt for a decent dr.

It's a shame my specialist can't see me as a GP. She is a shining light in a sea of crapy drs haha.

Perserverance is the way, I agree. I am glad to hear this eventually got you what you needed. Here's hoping this will also happen for me.

Re: Missdiagnosis wasted years

therising — Wed, 08 Apr 2026 10:05:49 GMT

You like to think they actually learn from their mistakes, which is simply a part of life. I once had a GP apologise to me for not listening to what I was trying to tell him. While he insisted on putting me on anti anxiety meds, I said 'No, this is not anxiety. I don't experience anxiety for no good reason. There has always been a good reason in the past. This is something else'. He refused to listen so I got a 2nd opinion which led to an MRI brain scan. It was a miracle; I was actually having one of my episodes while having the scan done. Turns out they were 'Silent migranes' which were setting off my nervous system something shocking. Mystery solved.

My mum had a great GP. Whenever he suspected a particular condition but wasn't 100% sure, he'd order blood tests, scans or send her to a specialist. A great GP's a medical detective with the attitude 'Let's collect as many clues as possible before settling on the usual suspect'. While in some cases it is the usual suspect, on other occasions all is not as it appears to be. Sometimes the best witness, regarding a medical mystery, is the patient themself. Highly questionable detectives tend not to listen to the best witness (of their own body), once their mind's made up. Hmmm, what can you say?🤔

'Difficult patient', 'hysterical patient', 'challenging patient': All can equal 'Fed up impatient patient'. On occasion, with intolerant or dismissive doctors, I like to imagine saying 'You gotta seriously respect a patient who's prepared to sit in the waiting room for as long as I just did' 😅

Re: Missdiagnosis wasted years

Eagle Ray — Thu, 09 Apr 2026 09:18:57 GMT

Hi SadboiArt and therising,

SadboiArt, you are right that it's very hard to find a doctor that knows anything about MCAS. Your best bet may be an integrative GP as they tend to be more broad-minded about those sorts of things (generally speaking, but still not guaranteed). I have had a lot of help from a naturopath actually who is very evidence-based, much more so than the mainstream doctors I've seen. While I was told by two specialists there was nothing more that could be done for my liver condition, the naturopath didn't see it that way at all. He did microbiome tests, an intestinal permeability test and allergy testing. Many meaningful issues were identified (major bacterial overgrowth, intestinal permeability, several food allergies). I took targeted supplementation and the identified problems healed and my supposedly progressive liver disease reversed with my liver readings normalising for the first time in years (showing a definite gut connection). He hasn't managed to completely solve the MCAS but he has had helpful treatment suggestions. There is an enzyme you can take to break down histamine and supplements such as quercetin. I also have a low histamine diet and take 3 types of antihistamine meds recommended by the hormone specialist doctor (cannot name them specifically as we're not allowed here). So I guess don't give up hope, but I know how hard it is, and of course there's no Medicare rebate with naturopaths making it more expensive.

I'm glad you've had help through TransHub, but it's so frustrating to lose a good practitioner. I feel like it's often the good ones who leave because of burnout and/or disillusionment. I did have a really great GP I saw in 2021 but she went on extended leave for family reasons and has never returned to practice, but it was the first time ever in my life I sat waiting in the waiting room to see her and I wasn't suffering horrible anxiety as I usually do seeing doctors - because she was kind, respectful and took me seriously. Like wow! Never once did she doubt me and she was the first GP to recognise and acknowledge Complex PTSD, something no other doctor had ever done. I didn't even have to explain, she just got it.

Yes, I do feel like many of them put people on a list for "hysterical women" (which as you point out doesn't apply in more ways than one for yourself). I feel like that list exists, even if they keep it in their head. The extreme irony is I know I have been more level-headed than the doctor every time. My own research hunches have been correct and by following them I have solved a lot of things myself. Had I relied on the doctor and believed their dismissal and invalidation, I'd be an unspeakable mess by now.

I really hope you do find the practitioners you need, and sooner rather than later. I've found thorough, persistent research and exploration can lead to some good leads. For example, I've had the perimenopause from hell. I listened to podcasts from one of the leading doctors in that field in the UK, heard an interview she did with an Australian doctor, found a practice where that doctor worked, contacted them and got put with one of the other doctors there, and she has been outstanding. She is really validating and it is actually a joy speaking with her. So there is hope 🤞🙏

And therising, I'm so glad you had the correct diagnosis for your silent migraines. It really is great when someone is investigating with you to solve a mystery, and also great that you listened to yourself and sought that second opinion.

Strength to us all. And feel free to chat further if it helps along the way.

Re: Missdiagnosis wasted years

SadboiArt — Fri, 10 Apr 2026 09:27:53 GMT

Hello again Eagle Ray. Wonderful that you made progress! I think when the gp gives up, that's when we seek second opinioms and alternative options.

I fully agree about gut health. Makes sense. Eat well = healthier, eat poorly = sickness. So simple, and when you get down to the gut biome etc, well it just starts making sense. I believe they are even discovering gut health and its affects on depression. Fascinating stuff.

Yeah, I have now seen 3 great drs loose their spark and change career direction. I know why, and I miss them. Because each of them were integral to the progress i HAVE made. It's nice to see a dr and not feel like they dismiss signs because of mental health.

Any dr who dismisses my research, I now consider a red flag and simply leave. I stopped being afraid of drs when something awful happened to me. The dr was reported and I realised that I have every right to feel safe and looked after under the care of any medical professional. It is a shame that no matter how level headed you are, the bias can still seep in. And then the dr will drop the ball.

Thank you, I am deep in the research currently. I have an ok dr right now. They aren't going to be able to make much progress with me, but they do what I request and treat me with respect. If I never find another, I think this ok one will be good enough for a time.

Strength to us all indeed. I truly believe that people who go through this sort of thing, are stronger than average. We suffer so much, and it forces us to find strength and resiliance.

Even if we find ourselves lost occasionally. As I feel now.

Re: Missdiagnosis wasted years

Eagle Ray — Fri, 10 Apr 2026 10:24:54 GMT

Hi SadboiArt,

I’m glad the dr you have now is good enough, so to speak. If they are respectful then at least they are there for certain routine things, even if they are not able to be ones to make great progress with. I’m glad you got those benefits and real progress from the other 3 drs you saw. I’m so sorry to hear of the awful experience you had and I’m glad that they were reported. Developing the inner strength to stand up for one’s own boundaries is so important. I think the more you do it, the easier it gets.

I saw a trauma informed GP from the city via telehealth this morning. I was hopeful he was someone I can work with, but he advised that it’s preferable I see a doctor in my region. I’ve spent 4 years trying very hard to find the right doctor for me in this region without success. I’m exhausted from it. I do have the hormone specialist dr who is great. I see her in the city via telehealth which works absolutely fine. I think the dr I saw this morning is likely scared off by the dissociative disorder I have. I’ve twice had people on helplines be fine with me until I mentioned the disorder then they freaked out and hurriedly ended the call. So it hasn’t even been safe at times calling helplines.

I totally agree with you, that we are stronger than average. I think we are likely more resourceful than most. I’m having a very down day today, but have to remind myself I have survived so much, and I know you will have too. I relate to the feeling lost, but it’s really not surprising to be feeling that way at times with what we’ve been through. Wishing you the best comrade and things can definitely get better.

Re: Missdiagnosis wasted years

SadboiArt — Tue, 14 Apr 2026 06:17:46 GMT

@Eagle Ray it feels like a loosing battle some days. I'm sorry that keeps happening to you, reaching for help and having your diagnosis scare people off.

A number of my diagnosis are always going to affect my ability to move through society. I share to hopefully help you feel less alone.

People tell us to seek help, call lifeline. But fail to understand that oftentimes, the help isn't truly there, not for the more complexe or permanent issues.

I'm also having a down day. It's hard to get the rest I need with so much that needs doing, that I'm expected to do etc.

People like us have survived some of the worst that life can deliver. I agree, it's logical fpr us to be the way we are.

A cheers to both of us for being here and a wish for a well earned break.

Re: Missdiagnosis wasted years

Eagle Ray — Tue, 14 Apr 2026 07:41:15 GMT

Hi SadboiArt,

Yes, it’s hard having a diagnosis and identity that others struggle to comprehend or accept. I know you really understand that from experience. Thank you for your support and understanding.

I’m doing better the last couple of days, so I hope you will experience a turnaround very soon too. But it’s more than understandable that we fall in a hole sometimes.

Both of the helpline counsellors who freaked out were on Lifeline, but I’ve also had some really good people there too who showed a real openness to learning and understanding about DID. The call then largely ends up being me providing a public education to them, but at least that feels like something useful. The Blue Knot Foundation is the one place I can call where I don’t have to explain myself at all. They already know what DID is and its origins in trauma. I think that’s why specific-focussed call lines like Blue Knot, Q Life etc are really important as they offer that element of increased safety and acceptance (less likely to be judged, typecast etc).

I hope you can find a balance between rest and trying to get stuff done. Sometimes I find giving up for a bit and totally resting is what gives me some renewed strength to tackle things. Just changing scene and going out into nature or somewhere that absorbs me for a while can help.

Take good care and sending you peace and kind thoughts.