Hello everyone. I'm 23 years old. I've been diagnosed with the dissociative subtype of PTSD.
I grew up in what I suppose was an abusive family. My dad hit us and had explosive anger issues. He yelled and called us names. He'd take food out of the hands of my sister and me when we were eating. I didn't realize this was an abnormal thing to experience until my friends told me they were afraid of my dad and stopped coming over to my house.
When I was 12, I got sick. I'd always had health issues all my life but they weren't paid much attention to until things got way worse after I caught a flu at 12. I had pain, muscle spasms, dizziness, fainting, nausea, and migraines. I was too nauseated to eat. I spent a lot of time in the hospital (about 3 weeks). No one could figure out what was wrong with me so they told me I was faking to get out of school. I was misdiagnosed with a somatoform disorder and given psychological treatment. Because of that, I internalized what I was being told: That my pain and symptoms weren't real, that it was my fault, and that I wasn't allowed to be sick. They were so sure of their misdiagnosis of me that when I wasn't getting better, they wanted me to send me to an out of state residential psychiatric program. I was scared. I didn't want to go and I didn't know what to do. Fortunately my mom made sure that didn't happen.
I remember my dad yelling at me to shut up when I made noise because of pain and saying he didn't want an invalid for a daughter. He forced me to exercise with him after I got out of the hospital even though I couldn't handle it. One time I fainted in the winter while we were skiing and he left me in the snow and kept going. The therapist I saw when I was diagnosed with the somatoform disorder told me "Don't think why me, think why not me." So my 12 year old self interpreted that to mean that I deserved to feel bad because I was a bad person. I had my gall bladder and appendix removed. There was nothing wrong with my appendix, they just took it out because they "wanted to save me a possible later surgery down the line." My gall bladder was functioning at a lower percentage than normal, but I've been told by another doctor that low functioning gall bladders usually aren't taken out unless they're causing issues.
I think they thought mine was causing issues, but since I didn't get better after they took it out, removing it was a mistake (as it wasn't what was causing the problem in the first place). I'd probably have an easier time digesting food with a gall bladder.
They put me on morphine and it didn't work for me, which (along with taking out my gall bladder not fixing everything) is probably what they used to justify the somatoform diagnosis.
I went through so many tests that were traumatic for me, as a kid. I had a spinal tap. I had surgery. I had endoscopies and colonoscopies. The first time I went to the ER a nurse checked for ovarian cysts by sticking something into my vagina. I didn't know what was going on or what was going to happen. It was horrible. I peed on the nurse and she got angry at me.
Eventually, I learned people didn't want me to be sick so I started pretending I wasn't.
A year after all this started, I was diagnosed with Postural Orthostatic Tachycardia Syndrome and the somatoform diagnosis was rightly removed, since they found out what I have is actually not in my head. I was 13 then. I'm 23 now. A few months ago I went to see a geneticist to determine the underlying cause of my POTS. I definitely have a connective tissue disorder and I'm getting genetic testing to figure out whether I have Hypermobile Ehlers Danlos Syndrome, Vascular Ehlers Danlos Syndrome, or Marfan Syndrome. I'll be getting tested for Chiari Malformation soon, a disease where there's a deformity of the skull which causes brain matter to descend past it.
So everything makes sense now. The connective tissue disorder is why I was always in pain - my limbs dislocate very easily. It explains why the morphine didn't work (pain meds and anesthesia often don't work for people with EDS.) The POTS explains the nausea, dizziness, and fainting. POTS is diagnostic criteria for some connective tissue disorders. And if I have Chiari, it'll explain the constant pressure in the back of my head.
But I'm realizing that I internalized a lot of what I was told by doctors so much and still struggle with it. I feel like my illnesses are my fault and when it doesn't get better, it means I'm not working hard enough. I feel like I can't trust my own perception of pain. I don't know how to relate to pain. I don't know how to classify it, because I don't trust myself. I can't answer the "pain on a scale of 1-10" thing because I don't know what the right answer is and I'm afraid of getting into trouble if a doctor thinks I'm exaggerating.
My parents divorced while I was in the hospital.
When I was 16, I was committed three times to a psych hospital. It was the worst experience of my life. I was denied water there until my lips cracked and bled. My physical illness was not accommodated and I was denied medication I needed for it. I was an outspoken person who always questioned why things were done the way they are, which got me a diagnosis of borderline personality disorder. My current therapist called to tell the psychiatrist who diagnosed me that I didn't have borderline personality disorder. I was told I'd be allowed to see or not see whoever I wanted while I was there, but they always let my dad in even though I was afraid of him and didn't want to see him. When my mom told them to stop letting my dad in, they also diagnosed her with borderline personality disorder, despite the fact she wasn't a patient.
I ordered my medical records a few months ago. They didn't believe I was being abused by my dad. They thought I was manipulating and lying to my mom, who was enabling me. They wrote that I was manipulative, insincere, had chronically limited insight, etc. Everything in my records was about compliance. The most important thing to them was whether I was compliant or noncompliant, not my health, physical or mental.
During one of my stays, I get anxious doing an assignment where I was supposed to list what made me anxious. I went back to my room. I apparently wasn't supposed to do that. A nurse called the guards. Let's just say what happened next involved me being held down and having my clothes removed, me being sedated, and um... I don't want to say I was beaten, but I ended up with giant bruises over my back, stomach, and arms, a dislocated shoulder, and the skin scraped off my feet. I was put in solitary confinement after. I don't know how long I was in there because they wouldn't let me out until I'd sat on the cot for fifteen minutes. I couldn't set up though because they'd sedated me so they didn't let me out. I asked for tylenol after I was released from confinement and the nurse told me I didn't deserve it because I'd hurt the guards.
Near the end, when it was happening, I kicked a guard out of desperation and fear. I didn't mean to, my brain was basically gone. I wish I hadn't because then I'd be able to live with myself.
In my medical records, they described the incident differently than it happened. They said I instigated physically (which I didn't, I was lifted into the air by two guards by my hands and ankles. That's the first thing that happened.) They also said I assaulted the guards and was an aggressive assaulter. The funny thing is that I thought they'd have enough to go off of due to the fact that I kicked a guard near the end. But they didn't even use that, they made things up. They said I leapt out of my bed and punched and kicked both guards in the face and groin. They said I fought the whole way and the reason the guards were called was to stop my violence. But that doesn't even make sense because it's not what happened.
I was very quiet the whole time. I think I couldn't believe what was happening. I tried to crawl away through most of it but kept being pressed to the ground. They held my arm behind my back and dislocated my shoulder. I kicked near the end. I didn't punch and kick people like a ninja in a deliberate manner. I wasn't trying to hurt anyone. I just wanted to get away.
Afterword, the nurses and psychiatrist's tried to get me to take "responsibility for my actions." They didn't call my mom and tell her what happened, she figured it out when she came to visit by looking at me. She asked them to do a review of their actions. They did an internal review and said that all protocol was followed correctly.
There are lies in my medical records, lies that say I assaulted people. You can't remove something from medical records without legal action, so it'll be there forever.
I was also put on medications I didn't want to take. I was 16 so I didn't have the right to refuse them. I was put on an antipsychotic that sedated me incredibly and made me unable to think. They interpreted me reporting side effects as defiance. When I asked to leave one of the times, they told me they were holding me to make sure I didn't develop a deadly side effect due to one of the meds they'd put me on. They didn't tell me that when they put me on it. No one asked me if I was okay with risking my life for a medication. That decision, like all others, was made for me.
I still remember the sounds of children screaming, children younger than I was who had the same thing that happened to me happen to them. I wish I didn't have to remember the sound. I witnessed a girl have a seizure and nothing was done about it. It was ignored and unacknowleged.
I tried for years after to find a therapist who wouldn't dismiss, not believe, or defend what happened in the psych ward. I had it justified and was told I deserved it over and over again by professionals. Eventually I realized no one wanted to hear about it so I pushed it away and developed dissociative amnesia. A few years ago, I started having nightmares and memories began to come back to me in flashbacks.
It took me a really long time to feel comfortable trying again (and even when I was ready to try I still wasn't really comfortable with the notion). But I did find a therapist about eight months ago who has been helping me through this without judgement or blame. She acknowledges that I experienced trauma and that I didn't deserve what happened, despite the location it happened in.
Like my past therapists outside of the psych ward, she told me she doesn't think I ever had borderline personality disorder. She diagnosed me with dissociative PTSD, which I think is the only thing I've ever had.
Before I'd worked through this as much as I have, I used to get really bad dissociation where I'd see my reflection move without me, forget my age, and where my name wouldn't sound like my name. Since I've starting talking about this, I dissociate far less frequently and a lot more benignly. So I'm glad for that.
This is very long, I hope it's not too long for anyone to want to read. If you did read this, thanks.
I grew up in what I suppose was an abusive family. My dad hit us and had explosive anger issues. He yelled and called us names. He'd take food out of the hands of my sister and me when we were eating. I didn't realize this was an abnormal thing to experience until my friends told me they were afraid of my dad and stopped coming over to my house.
When I was 12, I got sick. I'd always had health issues all my life but they weren't paid much attention to until things got way worse after I caught a flu at 12. I had pain, muscle spasms, dizziness, fainting, nausea, and migraines. I was too nauseated to eat. I spent a lot of time in the hospital (about 3 weeks). No one could figure out what was wrong with me so they told me I was faking to get out of school. I was misdiagnosed with a somatoform disorder and given psychological treatment. Because of that, I internalized what I was being told: That my pain and symptoms weren't real, that it was my fault, and that I wasn't allowed to be sick. They were so sure of their misdiagnosis of me that when I wasn't getting better, they wanted me to send me to an out of state residential psychiatric program. I was scared. I didn't want to go and I didn't know what to do. Fortunately my mom made sure that didn't happen.
I remember my dad yelling at me to shut up when I made noise because of pain and saying he didn't want an invalid for a daughter. He forced me to exercise with him after I got out of the hospital even though I couldn't handle it. One time I fainted in the winter while we were skiing and he left me in the snow and kept going. The therapist I saw when I was diagnosed with the somatoform disorder told me "Don't think why me, think why not me." So my 12 year old self interpreted that to mean that I deserved to feel bad because I was a bad person. I had my gall bladder and appendix removed. There was nothing wrong with my appendix, they just took it out because they "wanted to save me a possible later surgery down the line." My gall bladder was functioning at a lower percentage than normal, but I've been told by another doctor that low functioning gall bladders usually aren't taken out unless they're causing issues.
I think they thought mine was causing issues, but since I didn't get better after they took it out, removing it was a mistake (as it wasn't what was causing the problem in the first place). I'd probably have an easier time digesting food with a gall bladder.
They put me on morphine and it didn't work for me, which (along with taking out my gall bladder not fixing everything) is probably what they used to justify the somatoform diagnosis.
I went through so many tests that were traumatic for me, as a kid. I had a spinal tap. I had surgery. I had endoscopies and colonoscopies. The first time I went to the ER a nurse checked for ovarian cysts by sticking something into my vagina. I didn't know what was going on or what was going to happen. It was horrible. I peed on the nurse and she got angry at me.
Eventually, I learned people didn't want me to be sick so I started pretending I wasn't.
A year after all this started, I was diagnosed with Postural Orthostatic Tachycardia Syndrome and the somatoform diagnosis was rightly removed, since they found out what I have is actually not in my head. I was 13 then. I'm 23 now. A few months ago I went to see a geneticist to determine the underlying cause of my POTS. I definitely have a connective tissue disorder and I'm getting genetic testing to figure out whether I have Hypermobile Ehlers Danlos Syndrome, Vascular Ehlers Danlos Syndrome, or Marfan Syndrome. I'll be getting tested for Chiari Malformation soon, a disease where there's a deformity of the skull which causes brain matter to descend past it.
So everything makes sense now. The connective tissue disorder is why I was always in pain - my limbs dislocate very easily. It explains why the morphine didn't work (pain meds and anesthesia often don't work for people with EDS.) The POTS explains the nausea, dizziness, and fainting. POTS is diagnostic criteria for some connective tissue disorders. And if I have Chiari, it'll explain the constant pressure in the back of my head.
But I'm realizing that I internalized a lot of what I was told by doctors so much and still struggle with it. I feel like my illnesses are my fault and when it doesn't get better, it means I'm not working hard enough. I feel like I can't trust my own perception of pain. I don't know how to relate to pain. I don't know how to classify it, because I don't trust myself. I can't answer the "pain on a scale of 1-10" thing because I don't know what the right answer is and I'm afraid of getting into trouble if a doctor thinks I'm exaggerating.
My parents divorced while I was in the hospital.
When I was 16, I was committed three times to a psych hospital. It was the worst experience of my life. I was denied water there until my lips cracked and bled. My physical illness was not accommodated and I was denied medication I needed for it. I was an outspoken person who always questioned why things were done the way they are, which got me a diagnosis of borderline personality disorder. My current therapist called to tell the psychiatrist who diagnosed me that I didn't have borderline personality disorder. I was told I'd be allowed to see or not see whoever I wanted while I was there, but they always let my dad in even though I was afraid of him and didn't want to see him. When my mom told them to stop letting my dad in, they also diagnosed her with borderline personality disorder, despite the fact she wasn't a patient.
I ordered my medical records a few months ago. They didn't believe I was being abused by my dad. They thought I was manipulating and lying to my mom, who was enabling me. They wrote that I was manipulative, insincere, had chronically limited insight, etc. Everything in my records was about compliance. The most important thing to them was whether I was compliant or noncompliant, not my health, physical or mental.
During one of my stays, I get anxious doing an assignment where I was supposed to list what made me anxious. I went back to my room. I apparently wasn't supposed to do that. A nurse called the guards. Let's just say what happened next involved me being held down and having my clothes removed, me being sedated, and um... I don't want to say I was beaten, but I ended up with giant bruises over my back, stomach, and arms, a dislocated shoulder, and the skin scraped off my feet. I was put in solitary confinement after. I don't know how long I was in there because they wouldn't let me out until I'd sat on the cot for fifteen minutes. I couldn't set up though because they'd sedated me so they didn't let me out. I asked for tylenol after I was released from confinement and the nurse told me I didn't deserve it because I'd hurt the guards.
Near the end, when it was happening, I kicked a guard out of desperation and fear. I didn't mean to, my brain was basically gone. I wish I hadn't because then I'd be able to live with myself.
In my medical records, they described the incident differently than it happened. They said I instigated physically (which I didn't, I was lifted into the air by two guards by my hands and ankles. That's the first thing that happened.) They also said I assaulted the guards and was an aggressive assaulter. The funny thing is that I thought they'd have enough to go off of due to the fact that I kicked a guard near the end. But they didn't even use that, they made things up. They said I leapt out of my bed and punched and kicked both guards in the face and groin. They said I fought the whole way and the reason the guards were called was to stop my violence. But that doesn't even make sense because it's not what happened.
I was very quiet the whole time. I think I couldn't believe what was happening. I tried to crawl away through most of it but kept being pressed to the ground. They held my arm behind my back and dislocated my shoulder. I kicked near the end. I didn't punch and kick people like a ninja in a deliberate manner. I wasn't trying to hurt anyone. I just wanted to get away.
Afterword, the nurses and psychiatrist's tried to get me to take "responsibility for my actions." They didn't call my mom and tell her what happened, she figured it out when she came to visit by looking at me. She asked them to do a review of their actions. They did an internal review and said that all protocol was followed correctly.
There are lies in my medical records, lies that say I assaulted people. You can't remove something from medical records without legal action, so it'll be there forever.
I was also put on medications I didn't want to take. I was 16 so I didn't have the right to refuse them. I was put on an antipsychotic that sedated me incredibly and made me unable to think. They interpreted me reporting side effects as defiance. When I asked to leave one of the times, they told me they were holding me to make sure I didn't develop a deadly side effect due to one of the meds they'd put me on. They didn't tell me that when they put me on it. No one asked me if I was okay with risking my life for a medication. That decision, like all others, was made for me.
I still remember the sounds of children screaming, children younger than I was who had the same thing that happened to me happen to them. I wish I didn't have to remember the sound. I witnessed a girl have a seizure and nothing was done about it. It was ignored and unacknowleged.
I tried for years after to find a therapist who wouldn't dismiss, not believe, or defend what happened in the psych ward. I had it justified and was told I deserved it over and over again by professionals. Eventually I realized no one wanted to hear about it so I pushed it away and developed dissociative amnesia. A few years ago, I started having nightmares and memories began to come back to me in flashbacks.
It took me a really long time to feel comfortable trying again (and even when I was ready to try I still wasn't really comfortable with the notion). But I did find a therapist about eight months ago who has been helping me through this without judgement or blame. She acknowledges that I experienced trauma and that I didn't deserve what happened, despite the location it happened in.
Like my past therapists outside of the psych ward, she told me she doesn't think I ever had borderline personality disorder. She diagnosed me with dissociative PTSD, which I think is the only thing I've ever had.
Before I'd worked through this as much as I have, I used to get really bad dissociation where I'd see my reflection move without me, forget my age, and where my name wouldn't sound like my name. Since I've starting talking about this, I dissociate far less frequently and a lot more benignly. So I'm glad for that.
This is very long, I hope it's not too long for anyone to want to read. If you did read this, thanks.
