Peer support subsequent to trauma contributes to full recovery

Post Traumatic Stress Disorder (PTSD) -- including complex trauma (cPTSD) -- is debilitating, breaking down the body through anxiety and stress, and it poses a significant suicide risk in sufferers. MyPTSD seeks to help and inform those who are directly or indirectly affected by these conditions through peer-to-peer support and educational resources.

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Somewhat Unique Story - TwinLess Twin

Discussion in 'Introductions' started by Ju2, Nov 10, 2010.

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  1. Ju2

    Ju2 New Member

    Hello all.

    My story is very unique so I feel uncomfortable talking about it for the most part as only a handful people in this world will be able to understand. I am a twin-less twin, conjoined. My sister died right after separation.

    When I was a little girl I have not been told I was a twin, I started to act and play twin with my sister and showed other signs, like always wanting things in 2, that sort of thing.

    However it took me 21 long years to actually understand that one thing that I never will understand with my mind: she is gone and I am half.

    I look normal to the most part since we were together at the lower belly, I have an artificial abdominal wall but no one sees that usually. I am more than 70 % handicapped but no one realises that for I carry my scars and not them me.

    But since I looked at a medical article from that hospital with info about me, stuff I found on the Internet after wanting to know more about what happened back then, I had a shock. I started shivering, my body raced severely, and I never was the same.

    I got Depression, could not sleep, not eat, I tried to function. It didn't work. I stayed in bed for days, whenever I walked outside I could function but I lost trust in people and relationships bit by bit. I can't explain it. I lost my hope and joy in life, I try to keep holding onto it, through my near death experiences as a kid I know there is something bigger, and I feel what I believe is God and it gives me peace. But often I lack faith, I just in grief.

    When I was 25 I got access to some actual files and at first I was feeling relief , for once someone believed me that my memories from the 5 years in hospital were real, I could tell the professor the colour the operation room walls had back in 88, which table and picture was were, I went into one of my old rooms and could tell him that there used to be a view to some tower where now there was another building being put. My Memory came back and I felt relief for what I knew was real all my life I was not allowed to remember by my family.

    Then the other stuff came back, mostly feelings, things I could not understand.

    I got cramps at night, always at that spot where we got separated.
    I had pain and it didn't let me sleep. I let me grief and mourn for the death of my twin, for the first time. A twin I had always felt but was forced to deny since I was 9 years old for it was A) too tough on my family and B) reason for mocking by other kids

    Now i am in the position to no longer know who I am. It's a very complex thing, I am in contact with other twin-less twins and they all understand. I learnt that it does not matter when your twin died, that in fact those who got bereaved shortly after birth and lack memory are often the ones suffering the most. There is plenty that goes along with it.

    But for now all I want is to get back to life, I have not slept properly since February unless I stay with friends, and even then I seldomly fall asleep before 2 AM. I was unable to work for half a year, I took beta blockers against my high heartbeat and my shivering, and I learnt that I can say my twins name again, which I could not from age 21 to spring this year.

    I am in a process of understanding and yet I doubt I ever will. My body remembers what I do not understand consciously. It is as if half my body is six feet under, I for me is two and because the pain is so severe I held it back for more than 20 years.

    Friends and family failed short to support I know they tried but they see me as normal, some lie I lived in for 20 years, but I am not. And I know i need to account for the past to stop doing things in half, to stop trying to live for two, to start integrating her in my life.

    I feel her presence, or lack thereof, with every breath I take.

    Today was once again a night where I did not sleep at all.

    I try to be disciplined, I have a sleep and eat diary, for I eat little since then as well and am already underweight due to some handicap, I know I need to watch myself and be careful.

    Many of the symptoms in PTSD are mine. So I believe I am right here.

    Also I was at my best friend's place the day his parents got murdered. I went back 3 times for I felt something being wrong, I even thought about breaking in, the murderer was watching me all the time. I found out the next day. I felt guilty, had I called the police his Dad would still be alive. I thought about calling, but did not. I am 7 I thought, who will believe me.

    I know I am not responsible but I feel I am. Those 2 do not go coherent.

    But my family and neighbours talking about every detail so openly and the police questioning them - but not me - I remember how I thought how ridiculous, I was actually at their house 4 times during the murderer being there, and they didn't ask me a thing. Dumb police, and stupid parents. I saw the car, I remember telling my parents afterwards, again they didn't believe me, thought I made it all up. That I was actually in my mind already pretty developed because I was lying in hospital for so many years with my body being "late" in development, that they forgot. To this very day I cannot talk with any of my family members neither bout this nor my twin sister and the time in hospital without them reacting badly and putting me down.

    I was 9 when I was fully an adult. I went to doctors appointments on my own, and music class, did homework on my own and prepared coffee for my mum every day, cleaned up before she came home from work ( I had my own key, my sister came home 2 hours later though and my Mum worked 2 min away, they knew I was fine on my own, reading for the most part, and if I wanted something I could always ring and my Mum would come home) I had everything under control. Till I became an adult. And realised I never really was a kid.

    SO now I try to pick up the pieces, am able to talk about it, slowly, and yet once again all I mostly hear is that I exaggerate.

    I do not know if others do not want to understand at least the words I say.
    I was sharing flesh with another human being, we were one, the two together. We spend 9 months in the belly of our Mum, we were at the end of it ( as research proves these days) communicating with one another, sucking thumbs, and so on. Then we get born into this world and she gets chopped off and I am left alone and do not understand why others do not understand that I was supposed to be two.
    She was supposed to be with me, support me, be the one reading my thoughts, giving me comfort and warmth. I also always stuck a pillow to where she was in sleep when I was a kid, and still often do that now.

    OK, so this is my story. I hope one day the pain will cease, I will be able to put this behind me and her back into my life.

    I know I will never get over it as I will only feel complete once I am united with her, somehow, but I know that I need to work on patterns to get my symptoms at least sorted out, and then treated. I need to sleep again, I need to watch my thoughts, how I am in relation to other people, a big weakness , for attachment doesn't work quite as well for me as Freud assumed ( my first contact was not my mother, but my twin)...I know the road is long, but I know I will make it. I just wish it wouldn't be so hard, I just wish I at least had people at my side getting my pain, although not feeling it themselves, people standing by me. My family doesn't and I can't trust a man enough to let him be my bf. So I am alone. But I fight, and I smile. And I know life is worth living, and this will not rob me from it, but on dark days I wonder if all there is to overcome is to forget. For that to me seems like making my memories be a lie.
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  3. StressyJen

    StressyJen Active Member

    Welcome to the forum :) I know you will find comfort here.

    I must say I hope this sounds right, it's a lovely how much you love your sister and miss her so dearly. Of course the Anxiety and PTSD things you are dealing with are not lovely, but your love and missing your sister comes through so clearly in your words and it's endearing.

    I felt like my situation was very unique when I started here too. I found that what binds us is not so much what happened or how we got this way, but what happened in our heads as a consequence and that is where you will find people who can relate to your reactions, anxiety, fears, etc. and I think that you will find people like that here.

    Since you said you believe in God (and I do too), I hope you also find comfort that your sister is in heaven, and for me, I believe she is waiting for you, and cheering you on, for you to enjoy your life to the fullest until you join her there.

    bluecat likes this.
  4. Ju2

    Ju2 New Member

    Hello dear,

    Well, yes, but my issue is that my body reacts and I don't know what is happening to me. I feel normal yet my body remembers. I now allow for that to have room but it really makes me feel like I go crazy and I wonder if the only Cure is to pretend once again to not be what I am in order to find a way back to life. There is no comfort in knowing she is in heaven when I am here and my body reacts and my subconscious mind reacts and I don't know why and how.

    How do you guys do it? Do you try to forget? Try to focus on sleeping patterns that are healthy and eating normally and that sort of thing? and what when you get these attacks again? I don't wanna take beta blockers every time then, or other stuff.

  5. Ju2

    Ju2 New Member

    Plus can you please correct twinless twin? I know what I write about, it's twinless and not twin less and I prefer it being written in small letters as it is unsymmetrical otherwise. It took me 20 years to say that so I think it should not be such a big deal for you to re-correct that.

    Who knew some moderators on here show such little respect? do not reply to my story but edit what I am into an incorrect word.

    I really am hurt and angry, I was hoping for a little more sensitivity and empathy.
  6. bluecat

    bluecat Well-Known Member

    Hi Ju2,

    Welcome to the forum!

    I am so sorry to hear about your loss. It must be unimaginably painful. I am also a twin, although not conjoined and even in separation my twin sister has always felt as a part of who I am. I think of veterans who lost their limbs in War and how difficult that is, and your situation is even harder. Not only have you lost an integral part of your body, you also lost your sibling.

    None of what you describe is your fault, but I can so much relate to the Guilt that you're feeling, its such an integral part of PTSD, you'll find many people in here struggle with it. You've found a good place, people here carry a lot of pain, while braving their everyday lives and they will certainly understand where you're coming from and be supportive.

    Welcome again and I good luck with your recovery,
    StressyJen likes this.
  7. bluecat

    bluecat Well-Known Member

    This is not unusual in people who have lost a part of their body. When your brain developed, it was connected to the body of your twin and while your twin's body is no longer there, the brain doesn't know it. It only knows its not receiving any input/response and probably tries to compensate for it to maintain the neuronal circuitry intact. Its a difficult problem, have you ever talked to a neurologist who has experience with treating phantom limb sensations?

    PS: please, understand that the moderators are not here to hurt you. There is a set of rules everyone has to follow, it helps in the long term to maintain a very supportive and safe environment for everyone. Its a tough adjustment in the first couple posts, but please, don't get discouraged. This really is a very helpful and supportive forum.
  8. StressyJen

    StressyJen Active Member

    Re: twinless twin term, I don't know what is the right thing to call it, but I knew what you meant and it is how you feel so I think the way you call it is fine :)

    For "how do we do it", it is a combo of a lot of things for me. First, time... it has taken a lot of time to understand myself and my family and my traumas and what they did to me and what my family did not do that made me have PTSD. Therapy, God and my faith, understanding my own mother's illness, support (this forum), and drugs. Don't totally reject the idea of drugs, but it's important to find the right doctor to find out IF they might be able to help. If your brain has developed defenses so that you can't have normal emotions any more, drugs can help you so that you can begin to. But having the right doctor is the key so don't give up finding one.

    Re: the moderators. The first several posts I made were fixed for the title not being capitalized. I don't even think the moderators always read every thread while they are fixing titles, they just make the change and message gets sent automatically. They just want to get the titles changed quickly then do their reading later. So please don't take it personally.


    P.S. I think I see now you were referring to your thread title "TwinLess". I think maybe if it is very important to you you could send a private message to Amethist (she might not see the request if you don't) and she might change it to "Twinless". But each word in the title must be capitalized. I'm sure she didn't mean anything bad at all but was just correcting quickly. Just an idea, but I think they relate to people who are very particular about capitalizing things the way they want them to be so she might change it for you :)
  9. StressyJen

    StressyJen Active Member

    Also, I did some quick googling and I think you should google about "vanishing twin syndrome" or "surviving twin syndrome" or "cojoined surviving twin". I didn't read too much about it but it sounds like you may have something like one of these. Researching these might help you find some more people like yourself, some books on the subject, or maybe even a therapist who specializes in such things! I hope you do find the right support very much.

    Maybe you knew about these already, if you did, sorry!
  10. Ju2

    Ju2 New Member

    Hello dear.

    Vanishing twin is something else, they lost their twin inside the womb within the first few months and then the twin got a clumsy little something and is later either found inside them or the mum's e where she carries em out, I forgot the English word for it.

    Of course I already did googling :) I also read a couple of books bout being a twinless twin. still thank you very much for your tips.

    I am mainly here to deal with my anxiety and my sleeplessness and depression, the outcome of my body remembering and having cramps where we were separated.

    I am very active in the lone twin network as it is called in the UK and the twinless twin network as it is called in Australia and the States. There is plenty of support in mourning her, yet hardly anyone obviously feels cramps from where they were separated as there is very few like me. The info bout being twinless is covered though :) also bout the problems with relationships as we offer expect a lot from those close to us , wanting to replace what we lost and are at the same time in fear of loosing again so don't open up so quickly in deep levels.

    It would interest me if there is also people here who suffer without remembering anything with their conscious mind, yet their body reacts, with craps, heartbeat rising and so forth when something triggers it off or in general.

    Thanks all for your kind words!
  11. a nonny mouse

    a nonny mouse Well-Known Member
    Premium Member


    My Mum is a twin. Her twin brother suffers incredibly badly from anxiety. He actually had a major heart operation recently and when my Mum told me, well I felt so badly for her. Like she might lose half of herself or something (?). I was actually just as concerned for her losing her 'twin' as I was for him. It actually really upset me, and yet he was the one having the operation. But I think there must be something about losing a twin which really does feel like you lost part of yourself.

    Again, welcome. Your story really is rather unique. There is probably a lot to be learned from you.
  12. anthony

    anthony Master of none!


    I would strongly advise you to treat editors with respect for the job they must do, without the attitude. I have seen the messages sent, and I'm unimpressed. Manners goes a long way, however; dictating does not. If you look at the rules, the first letter of every word in a title must be a capital, hence regardless of your request for it not to be, it breaks the forum rules.

    Again, please treat editors and members with respect or I will remove you from this forum without further warning.
    amethist likes this.
  13. Iam

    Iam I'm a VIP

    Welcome to the forum Ju2. You indeed have a unique story. I am so sorry for your loss. I can only imagine how it must be to feel half of yourself missing. My father has a vanishing twin who is located somewhere in his body. I can't remember where.

    Though I have remembered much of my childhood Abuse I have recently aquired memories of some of my traumas, some are only partial memories. It has helped me understand why my body reacts the way it does to certain triggers. So yes, our bodies remember the emotions we experienced during traumas even if our concious mind does not. When something triggers that same emotion, fear, anxiety, anger etc. our body will react like it did then. At that time maybe there was a huge danger and our reaction was a 9 on a scale of 1-10. This intense reaction would have been appropriate for that situation. Maybe the current trigger really only requires an emotional reaction of say a 3 yet our body still reacts as if it is a level 9 situation simply because the body reacts to the old trauma.

    I do not know if this relates to your feelings of your twin, but it does answer the question about the body remembering trauma even when the mind does not. I could see how your body would remember the connection and then the actual operation of separating the two of you. It also makes sense that you would unconsiously fear close intimate relationships because your body and subconcious remember such a tragic, hurtful loss.

    Anyway, I do wish to welcome you to the forum. I hope that you find the support you are looking for here.
  14. seraphimfelldown

    seraphimfelldown Active Member

    Both of my children are twinless twins. I think. Both had a twin that died along the way around the 2nd trimester. I don't carry pregnancies very well and interestingly they are the only ones that stuck. I wonder what to tell them about it though. Should they even know?
  15. Ju2

    Ju2 New Member

    I decided to leave, you guys are beyond preposterous. Have you googled? Do you know that the correct way to say is twinless and not twin less?
    Do you know what it triggers off in me? Do you know I am German and trying my best to be ok with the English language?

    You made me cry. I seek for help and not once did you reply to my story but acted harsh, rude and simply wrong. I do care what the forum rules are, but rules are for people to get by, I do not know what I did to you to reply to me in sude rude manners but I know this is damaging and I honestly hope one day you will see the pain you cause with being such a prick.
  16. Ju2

    Ju2 New Member

    I am leaving this forum from now on, unfortunately cannot remove my account, but learned my hard lesson in why some do not care about common internet policy in regarding to privacy and deactivating accounts yet want to correct in ways in which they are actually wrong and should first inform themselves better ( it is twinless and not twin less, fact).

    Good bye.
  17. JadeBear

    JadeBear I'm a VIP
    Premium Member

    It seems to me if you're leaving this forum over 'twin less', then you never really wanted help in the first place, did you?

    Sorry you feel the way you do, but I guess it is what it is.....
    Lucycat and James B. like this.
  18. Ayesha

    Ayesha Yarn and Cat Crazy.

    Mein Deutsch ist nicht sehr gut. Es tut mir leid Sie verlassen wollen. Es war für Sie zu erzählen Sie Ihre Geschichte Fremden schwer. Sie haben eine sehr einzigartige Geschichte. Wir versuchen zu helfen, aber wir sind auch nur Menschen.

    Translation: My German is not very good. I am sorry you want to leave. It was hard for you to tell strangers your story. You have a very unique story. We are trying to help, but we are only human.
    Lucycat likes this.
  19. StressyJen

    StressyJen Active Member

    I wish you the very best.

    The requirement to capitalize pronouns in thread titles strikes me odd and is a little annoying (not sure why just a Jenny thing I guess), but I got over it in my head, and it's well worth it. This is not a complaint to the wonderful mods - just an example how we all have different feelings about minor things.

    If you decide to blow off this one thing that irks you too, I hope you will come back. We can't all have the same ideas about everything, but it does make sense that we defer to the people working hard to make this a safe and friendly place for us on these minor issues in order to keep our formatting consistent.
  20. Kiskit

    Kiskit Member

    I don't necessarily agree that Ju2 didn't want the help & comraderie that is supposed to be a part of this forum. It takes a lot of courage & at least some refection back to one's trauma when you introduce yourself to this forum.

    Think how difficult it was for many of us after posting our traumas & expecting the worst for doing so. I know I felt vulnerable & about to get abused after my first post, especially when one of the mods sent a pm when I didnt capitalize my header (i am unable to bend my last 3 fingers of L hand now after a pair of Great Danes attacked my service dog in June this past summer. i have gotten lax in typing caps in other forums I use & just fell into that pattern here.)

    My initial reaction to the mod's pm was to just quit this forum. i really was in gut-wrenching anxiety that physical abuse was around the next corner. I am a perfectionist about many things and the more my disabilities & this latest hand injury I have to let certain things go in my normal day-to-day living. Luckily for me it wasnt a totally messed up day regarding my PTSD symptoms when I read the pm.

    I was able to talk myself down that "no I wasnt going to get abused." regardless of the reasons for or against caps in the headers, i just had to be more careful; take the extra time to capitalize headers in future despite my situation with typing now. its not my "house" & if it were I would expect guests to try to follow my rules. its not a major deal to me to have to cap the headers here.

    That said, I can relate to Ju2 getting on the defensive & even "quitting" over a "preposterous" rule. Maybe it's that age-old PTSD creed of self-destruct-mode we all can relate to either recently or way back when undiagnosed or poorly treated ptsd symptoms went unchecked & we had no clue why we acted the way we did.

    Or, perhaps, Ju2 (& I hope you are still reading this & considering becoming a part of this online community) was triggered by how the situation came down, maybe felt threatedned or whatever. It may have been over a minor disagreement on typing and editing issues. Yet, when we are at our breaking point, how many of us have never lost control or gotten way to defensive or wound up over seeminly minor issues.?

    Just last week, I completely went nuts over my mom (primary carer for me, now) taking one of my new ink pens without telling me (she tends to misplace things and I no longer am able to drive to go and buy new things on the spur of the moment). Yet the real issue was I had been up all the night before numerous times from a flood of nightmares and i was totally on edge that the first minor thing & I lost it, then hated myself for yelling over a dumb issue and then the self-hate talk, Shame and that whole viscious cycle.

    We do need to follow this forum's sense of rules, I agree; even if it isn't what some of us would do or are used to or whatever the reason is. I just know that I can relate to Ju2's sudden flight from the forum after the first bit of disagreement over a seemingly minor issue. Its another script we follow in attempts to deal with our traumas that usually goes bad for us & doesnt really affect the object of our ire.

    I hope Ju2 does reconsider joining this forum. Ju2 like most of us sufferes is obviously in pain. I know that I often have fought with those who said they were supportive of me, & most were, but my pain was so great and often still is that I feel even the supportive ones are really the enemy. Intellectually I know the difference but our feelings can be so powerful that we push all others and that subconscious self-sabatage is second nature.

    Ju2, if you never want to be a part of this again, & you read this: Just know that you are a valuable person. You are obviously in pain, if this forum aint for you, please find someone where you are to talk to whether a therapist or a group or whatever. Being in this pain with no support is a lonely, dead-end path. I've been there.
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