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. 

[moody-_ahhhhh]

@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

[Eagle Ray]

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.

[therising]

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. 

[SadboiArt]

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

[SadboiArt]

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.

[SadboiArt]

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

[SadboiArt]

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 😉

[SadboiArt]

@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. 

[therising]

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' 😅