Discussion anyone else that has a rare mental illness or physical condition?

[kosmischerunfall]

does anyone here have something special about them? like so rare that almost nobody has heard about something like that?

the conditions where your met with questions marks???

i feel so lonely, i have something called avpd(not diagnosed)
but it makes my life a living hell, FUCK, socials skills are so integrated in human nature, and i had to be the odd one, that has none.

i'm even emberassed to talk about it, im scared people will downplay my suffering

"its only social anxiety!!!"
no. no it's not.

being seemingly alone with such an overlooked mental illness makes me feel lonely and it feeds more of my costant negative only fucking weirdo in this world mindset.

yeah.

 

[NormallyNeurotic]

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[violetforever]

thats rare??? for years ive been like 99% sure i have it too.

 

[ipmanwc0]

I have avpd too. Didn't know there was a name for it until now though. Neurotypicals don't know the name of like any conditions besides anxiety and depression so them not knowing it doesn't it particularly rare. My condition, DPDR, is not known by any of the doctors I've seen

 

[woofwag]

Omg hey someone else with AVPD! Yeah it also ruins my fucking life. I didn't even realize I had it until a couple years ago. All the endless daydreaming, avoiding people because I feel like I don't deserve them, constant self-depricating, it all made sense. And ofc so much more.

Nobody has any idea what PNES is (psychogenic non-epileptic seizures) but that's another one I've got. Basically I have dissociative seizures and there's no cure, they just happen at random and I have to just roll with it. It could happen while I'm driving and I could crash off the side of the highway and die but like, who gaf, I'm gonna do that anyway. Although some anti-seizure meds do help reduce the frequency of them, so I have some suspicion that a few could be epileptic but fuck it we ball, I'll never know and don't care to know anyway.

Not as big of a deal but I also have dyscalculia, which is basically math dyslexia.

Bonus points for POTS, it's relatively well-known but definitely need to have more awareness spread about it.

 

[TwistedNightmares]

I have 22q deletion also known as DiGeorge Syndrome. I have yet to find anyone who actually knows what this disorder is. Even doctors are confused when I mention it.
It's a disorder I wish I didn't have, as it comes with a bunch of psychological issues, as well as sleep issues.

I also had no idea that avpd was considered rare.

 

[idiotmother]

I have protracted withdrawal syndrome from Effexor, severely complicated by being forced onto anti psychotics. I feel exhausted, anxious, anhedonic and depressed all the time. I can't even fully describe the damage these meds have done but it's horrific and I can't just taper off of them because my brain is so injured. There's no treatment and no medical providers believe that these substances are harmful; they gas light me and think I'm insane. It's destroyed my sleep and overall quality of life which is why I need to die at some point, there's no healing from it for me.

 

[Blackthorne]

I have protracted withdrawal syndrome from Effexor, severely complicated by being forced onto anti psychotics. I feel exhausted, anxious, anhedonic and depressed all the time. I can't even fully describe the damage these meds have done but it's horrific and I can't just taper off of them because my brain is so injured. There's no treatment and no medical providers believe that these substances are harmful; they gas light me and think I'm insane. It's destroyed my sleep and overall quality of life which is why I need to die at some point, there's no healing from it for me.

As I found out fairly recently being able to sleep soundly and without interruption truly is the foundation of both health and well-being so anybody who struggles with that has my sympathy. It feeds all the symptoms you described. A vicious cycle: rinse and repeat. No wonder you feel the way you do. I do too, although for a different reason.

I think many doctors forget what they practice isn't an exact science so anything that doesn't neatly fit textbook definitions and lists of recognised symptoms tends to fall between the cracks and is ignored or belittled.

There is no doubt antipsychotics are harmful: they tend to come with all sorts of neurological symptoms. Other psychiatric drugs too: on a psychiatrist's insistence (she actually seemed sincere about wanting to help me and I was tired of suffering and having no energy whatsoever, not to mention being young and foolish at the time) I once took an antidepressant for only a few months and my reward was a side-effect that hasn't fully gone away even decades later. Of course that 'sincere' shrink never warned me about it although it was on the list of possible side-effects mentioned in the medication leaflet.

 

[idiotmother]

As I found out fairly recently being able to sleep soundly and without interruption truly is the foundation of both health and well-being so anybody who struggles with that has my sympathy. It feeds all the symptoms you described. A vicious cycle: rinse and repeat. No wonder you feel the way you do. I do too, although for a different reason.

I think many doctors forget what they practice isn't an exact science so anything that doesn't neatly fit textbook definitions and lists of recognised symptoms tends to fall between the cracks and is ignored or belittled.

There is no doubt antipsychotics are harmful: they tend to come with all sorts of neurological symptoms. Other psychiatric drugs too: on a psychiatrist's insistence (she actually seemed sincere about wanting to help me and I was tired of suffering and having no energy whatsoever, not to mention being young and foolish at the time) I once took an antidepressant for only a few months and my reward was a side-effect that hasn't fully gone away even decades later. Of course that 'sincere' shrink never warned me about it although it was on the list of possible side-effects mentioned in the medication leaflet.

Yes you're right about the sleep part, it teuly screws with everything else. Thank you for your sympathy .

The doctors definitely forget that it's not an exact science and that not all patients will fit the same mold or respond to medications the same way. I tried explaining my situation to doctors while inpatient and they didn't believe me at all, it was so discouraging. I don't want to speak to another medical "professional" again, but of course I'm being pushed to.

Gosh I'm so sorry you're suffering from side effects from something you took decades ago. It's truly monstrous what these drugs can do, they truly destroy people.

 

[muu]

i have a few chronic illnesses, but most of them are pretty common. people (especially older folk) constantly question what the hell they are even though they are becoming more and more common and more and more diagnosed. it's frustrating!

[Hidden content]

idk how to do the hidden content thing, i would if i could, but i'm also suspected of having the last one you mentioned in your first paragraph. absolutely ruined most of my childhood. i wish you the best and i'm here if you wish to talk. <3

 

[doomedbynarrative]

Born with a rare congenital defect among other things! Hello!

 

[Blackthorne]

Yes you're right about the sleep part, it teuly screws with everything else. Thank you for your sympathy .

The doctors definitely forget that it's not an exact science and that not all patients will fit the same mold or respond to medications the same way. I tried explaining my situation to doctors while inpatient and they didn't believe me at all, it was so discouraging. I don't want to speak to another medical "professional" again, but of course I'm being pushed to.

Gosh I'm so sorry you're suffering from side effects from something you took decades ago. It's truly monstrous what these drugs can do, they truly destroy people.

Your aversion to the medical profession is quite understandable given your experiences. Perhaps you should go to another hospital where they don't have access to your medical record and list your symptoms and ask them to check it out. I wouldn't make any claims about cause and effect (doctors tend to get pissed when you do that since it's basically their job and to them it probably feels like you stepping on their turf) and simply state the facts. I don't know where you live but you ought to be entitled to a second opinion.

The side effect of the antidepressant isn't debilitating but I'm glad I realized quickly psychiatrists weren't the answer to my existential problems and certainly not their mind-numbing and altering drugs. It still angers me just how careless if not downright negligent these people are prescribing dangerous drugs that can and do real damage to people. Based on little to no actual science. They've been lying to the public about antidepressants in general and SSRI's in particular having been proven to work because they augment serotinine levels in the brain. The implication is clear: depression is caused by a simple deficiency of a neurotransmitter in the brain. This has never been proven and was fairly recently completely disproven. In my view this is fraud and all those who perpetuated the myth should be held liable.

 

[MyLifeisHell]

I have suffered from an extraordinary condition that has seemingly eluded the understanding of doctors. Won't get into details. So tired of that.

Health professionals exist in a sort of Schrödinger's box of their own making, where they are either infallible experts or "only human", to be selected at their discretion.

 

[Arvayn]

I am a schizoid. Some sources say that less than 1% of the population has it, others say that it's closer to 4% or 5%.
The only reason I have friends is because people go out of their way to be my friend. I wouldn't be particularly hurt if they were to just disappear, but I suppose I do care about them in some way, since they've helped me quite a bit.
I want to disconnect from society. Despite this, I've learned social skills and I am quite good at putting them into practice. But if I had the chance to just not talk to anyone ever again, I would. It does not make me anxious or afraid to talk to people, I just feel better when I am alone and I can choose exactly who I talk to, for what reasons, and when. This forum is pretty close to that, and it's also interesting to me on an intellectual level, so I've been enjoying using it.
I have no connection with my family other than a superficial one. I have highly blunted emotional affect; it is hard for me to become sad, happy or angry, but if these emotions are triggered, which almost never happens, I still feel them strongly. In my relationships, I've received complaints that I am not sexually active enough; it's not that I don't enjoy sex, I just don't really care to seek it out. I'm indifferent to it. I would not say I am asexual, because it's not like I actively dislike the activity, and I still get hormones.
My entire life is simply indifference. I receive notable happiness from very little things, among which getting to do nothing is on that list. The one time I was lucky enough to find something I passionately cared about and wasn't indifferent to (which is the only time it's happened in all my life), it was stripped from me, I had a psychotic break, and then my schizoid traits intensified even further.

There's more symptoms to list, but I'm getting tired of writing about it.

 

[suffering2026]

visual snow, tinnitus, and treatment resistant ocd

 

[idiotmother]

Your aversion to the medical profession is quite understandable given your experiences. Perhaps you should go to another hospital where they don't have access to your medical record and list your symptoms and ask them to check it out. I wouldn't make any claims about cause and effect (doctors tend to get pissed when you do that since it's basically their job and to them it probably feels like you stepping on their turf) and simply state the facts. I don't know where you live but you ought to be entitled to a second opinion.

The side effect of the antidepressant isn't debilitating but I'm glad I realized quickly psychiatrists weren't the answer to my existential problems and certainly not their mind-numbing and altering drugs. It still angers me just how careless if not downright negligent these people are prescribing dangerous drugs that can and do real damage to people. Based on little to no actual science. They've been lying to the public about antidepressants in general and SSRI's in particular having been proven to work because they augment serotinine levels in the brain. The implication is clear: depression is caused by a simple deficiency of a neurotransmitter in the brain. This has never been proven and was fairly recently completely disproven. In my view this is fraud and all those who perpetuated the myth should be held liable.

I've tried other doctors and it's just pointless, I just need to die. They definitely don't like being told what's wrong and that's what I've done because all they want to do is prescribe more poison . They keep thinking it's my original illness which it's not, I've never been this horrible before medication. It's all so pointless and my therapist wants me to try another inpatient shtick and I just can't. I feel like the walls are closing in , I'm so terrified of what these devils can do.

And yes, the depression theory has been disproven and yet they refuse to acknowledge it. They refuse to do anymore learning than they've already done and it's despicable. They are so arrogant and dangerous I really wish they could be the ones to die instead. Bastards.

 

[Blackthorne]

I've tried other doctors and it's just pointless, I just need to die. They definitely don't like being told what's wrong and that's what I've done because all they want to do is prescribe more poison . They keep thinking it's my original illness which it's not, I've never been this horrible before medication. It's all so pointless and my therapist wants me to try another inpatient shtick and I just can't. I feel like the walls are closing in , I'm so terrified of what these devils can do.

And yes, the depression theory has been disproven and yet they refuse to acknowledge it. They refuse to do anymore learning than they've already done and it's despicable. They are so arrogant and dangerous I really wish they could be the ones to die instead. Bastards.

After ruling out relying on the so called 'mental health professionals' and taking responsibility for my own life I did much better, met some great people, learned to control my own mind and so on. My view then, mostly based on ignorance, was that physical medicine at least had something real to offer and was science-based and its practioners act in good faith.

Now I know they like keeping you in the dark about your condition (especially when they're essentially impotent at curing it) and expect you to blindly follow their commands. Luckily I know the law so I don't have to (informed consent, right of refusal of medical treatment). So far three doctors (2 GP's and 1 cardiologist) have lied to my face about the blood thinner I take for my heart condition offering me complete protection against blood clots and the heinous complications they can cause. No I'm not 'safe': they only reduce the risk by 60%, they don't eliminate it. It's even got its own fancy name in the medical jargon: 'residual risk of thromboembolic complications despite anticoagulation'. Basically you can still have thrombosis inspite of the medication that is designed to prevent exactly that.

Like you I felt betrayed by people I'm supposed to rely on to protect my health but since they seem to insist on trying to deceive me and I have the bad luck of acquiring an illness that cannot be cured (only 'managed') I also have concluded that since I deem the risk of living with this too high death is the only recourse.

I can't comment on the specifics of your predicament since I don't know anything about it but I do know what it feels like when the medical profession fails you. It's a tough spot to be in.

That being said while we obviously can't will ourselves to become healthy again I do believe we decide what our reaction to adverse circumstances like illness and the accompanying thoughts and emotions is going to be. That's what I'm trying to do: I don't want to die depressed and despairing. I want to meet death with a clear, happy mind. Everybody has to die including the now healthy, doctors of all stripes and the shiny happy people but how many are able to overcome the terror of death and manage to let go of their inborn, instinctual attachment to life? Regardless of what or may not come after: a person who has conquered the fear of death is to be admired far more than a world conquerer. That is my goal now. In my view it's a far worthier goal than any I had before. I now understand why people let go of worldly possessions and attachments and walk the spiritual path of wisdom and peace.

In the Dhammapada (vers 178) this is formulated rather beautifully:

"Sole dominion over the earth,
going to heaven,
lordship over all worlds:
the fruit of stream-entry
excels them."

In Buddhism stream-entry is seen as the first stage of Enlightenment. Regardless of the path you choose I think there is truth in it. Even in the midst of a raging fire we can find peace in our own heart and mind.

I hope you will be able to let go of your fears and attachment and find peace. Don't let anyone else control your state of mind. You deserve peace and happiness.

 

[overthrone]

i don't think this is rare per se but i have dermatillomania

 

[SchizoPolyGymnast]

I have a severe case of developmental visual-spatial disorder. My diagnosis is found in 0.02% of the population and many experts don't think it really exists.