Missdiagnosis wasted years

[SadboiArt]

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. 

[Eagle Ray]

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.

[SadboiArt]

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. 

[Eagle Ray]

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.

[SadboiArt]

@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. 

[Eagle Ray]

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.