Diary of a Newly Diagnosed Dissociative Part 3: Loneliness
Living with Dissociative Identity Disorder can be excruciatingly lonely. I endured my loneliest moments with DID in the first few years after diagnosis. Granted, my primary relationship at the time was drawing its dramatic last breaths and I'd recently lost my job. I had virtually no support system and was barely able to feed myself and my child. There's no doubt my loneliness was the result of more than just my Dissociative Identity Disorder diagnosis. But when I look back through my diaries from that time period, it's clear the diagnosis was partially to blame. In hindsight, it's easy to see why.
I Felt Aberrant Because of My Dissociative Identity Disorder Diagnosis
Over the years I've heard from many people newly diagnosed with DID and almost without exception they report a pervasive but vague sense of otherness that's accompanied them nearly all their lives. That's been my experience too. Even today, no matter how well I blend in with others, I can't shake the nagging feeling that I'm different, abnormal. Nowhere is this feeling more pronounced than in my diaries from the first few years after diagnosis - the first years after someone validated that yes, I'm different.
It doesn't matter how much I like someone or love someone, there's always this chasm between us. It feels like I yell over from my side and every once in a while someone yells back. After a while though, it gets too frustrating - what with all the "What'd you say?" and "Come again?" - and they give up in favor of people who don't have to shout. I don't blame them.
I Felt Rejected Because of My Dissociative Identity Disorder Diagnosis
Other than my therapist and an online forum, there was no one for me to talk to about my diagnosis and the intense confusion and fear I felt. But I can't make sense of things when I can't talk about them. So talk about it I did, in inappropriate places and to the wrong people altogether. The rejection I repeatedly experienced was humiliating. Loneliness hollowed me out and threatened to bleed me dry of hope for anything other than more of the same.
People would like me better if I didn't have DID. They wouldn't think I'm talking weird or acting weird. They wouldn't think that I'm a game-player. I can't help [having DID] though. And I don't want to lose [my alters] anyway. It's like I have to choose between being alone in the world or alone in [my head]. I don't want to choose. I don't want to be alone either place.
Fortunately, I'm astonishingly stubborn. Though my experiences during the first few years after my Dissociative Identity Disorder diagnosis made it exceedingly difficult, I operated as if the degrading loneliness I felt didn't have to be permanent. And though loneliness is part of the human condition, and though DID is isolating, I did eventually begin to feel a part of the human race again.
Complete Series: Diary of a Newly Diagnosed Dissociative
- Part 1: Confusion
- Part 2: Fear
- Part 3: Loneliness
- Dissociative Identity Disorder Video: Diagnosis and Shame
- Part 4: Desperation
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Gray, H. (2010, December 9). Diary of a Newly Diagnosed Dissociative Part 3: Loneliness, HealthyPlace. Retrieved on 2019, September 17 from https://www.healthyplace.com/blogs/dissociativeliving/2010/12/diary-of-a-newly-diagnosed-dissociative-part-3-loneliness
Author: Holly Gray
When a workmates husband was diagnosed with cancer, she told of feeling isolated and lonely - despite having an extensive support network. It wasn't because there weren't people around her waiting to step up and help, it was that they didn't understand what she was going through. Because of the nature of cancer support, she found the acceptance and understanding she needed through different professionals and groups.
But, trauma survivors are navigating a different set of issues... there's shame, disgust, guilt etc. Do those issues mean it's more difficult for us to find that acceptance and understanding? Do we even know what we are looking for when we seek help?
I experienced similar feelings of loneliness when I was first diagnosed. It felt like I was the only person in the country diagnosed with DID - even though I knew intellectually that this wasn't possible. It felt like I was stumbling around in the dark, not knowing where I was going or why. I then came across health professionals who weren't supportive, so I withdrew further. It wasn't until I talked to another dissociative, that I started to feel a little less like a freak.
I think you're right Holly, education is key. But it has to be gentle, as everything feels so overwhelming and crazy-making.
"Do those issues mean it’s more difficult for us to find that acceptance and understanding? Do we even know what we are looking for when we seek help?"
While I wouldn't say it's harder for us, I do think it's different. In other words, it's harder in some ways and easier in others.
As for me, for a long time I had no idea what I was looking for. I wouldn't have known what to look for. I just wanted it to go away.
"I think you’re right Holly, education is key. But it has to be gentle, as everything feels so overwhelming and crazy-making."
I forget about the gentle part. :) You're so right. Sometimes it's hard for me to really remember how fragile and lost I felt and how people could say things to me that wouldn't bother me in the least now but sent me tumbling into spirals of self-doubt and turmoil back then. It's hard for me to find that balance now, as someone who writes about DID - between talking honestly about things people don't always want to hear but that I believe are vital, and being gentle.
I have a supportive boyfriend and a few supportive friends who, while they couldn't assuage the loneliness, helped keep the ground under my feet. I still feel that loneliness, even having good friends with DID I still feel like lone man on the island because every system is different. Maybe it's self-imposed loneliness, I don't know.
It's good to hear from you.
I still feel lonely too. It's just not anywhere near as crippling as it once was. Now what I live with is that constant loneliness that runs like a thread through my entire life. I do think internal loneliness - a lack of connection to other parts of self - exacerbates external loneliness. I find I'm a little less lonely when I feel more connected with my system.
And I know what you mean about every system being different. It's astonishing how validating it is when I reveal something about my system to someone else with DID and they completely understand. It's hard to feel like, even among others with DID, you're different.
I've been struggling with my reply because I actually isolate myself...on purpose.
So...I have had this inner dialog going on regarding whether or not I have the right to discuss loneliness when I go to such great lengths in order to be alone. But as you mentioned above, DID is isolating. So I will accept that isolation is a normal by-product of DID.
The nagging inner thoughts such as feeling abnormal, contribute to the isolation because we are always wondering if other people can see just how abnormal we are...and we are positive that they can!
I find what you wrote in your diary on 8-4-04 so interesting because when I interact with people, and I'm doing my best to blend in, I am always wondering if these people have caught on to "my game". But the game is really just me trying desperately to appear normal. Everyone knows that we have to navigate through a variety of situations in life, which means that for someone with DID, our "games" must change for each and every situation. It's not fluid, if you know what I mean. At the same time, I don't want to lose my alters, either. I panic at the thought of not having them because they all serve a function for me.
Rejection is hard. Even before my diagnosis, I had issues regarding rejection, abandonment, and trust. So to try to express what DID is like to somebody, and then have them reject you is very difficult and humiliating.
My external support system is my therapist, and this blog. My family rejected me long ago, and my best friend avoids the topic of DID when I try to talk about it as if it will just go away if we don't discuss it. I believe finding this blog literally saved my life.
Thanks again for sharing again, Holly. I hope you realize how much it is appreciated.
"So…I have had this inner dialog going on regarding whether or not I have the right to discuss loneliness when I go to such great lengths in order to be alone."
Oh gosh, yes you do! I was the same way ... I was painfully lonely but had to force myself into the company of others. Part of my reticence was due to the fact that being around people had little to no effect on my loneliness. In fact, it often just made me feel even more lonely. This was a loneliness that wasn't born of being alone; it was a lack of connection, an inability to connect no matter how many people were around me, and no matter how much I tried.
I still have that problem, I always have. But it was exacerbated by my diagnosis to an almost unbearable degree.
I'm really glad Dissociative Living is helpful to you. And I hope you know the discussion is helpful for me too. So thank you for being here and sharing your thoughts. I know it can be hard to speak up. It means a lot to me that you do.
" ... because of the rarity of face-to-face meetings with other multiples, it’s natural to feel that sense of loneliness and have it persist."
For me, the loneliness was too impenetrable to be affected much by face-to-face meetings with other multiples. I was fortunate enough to meet three people with DID during those incredibly painful early years and though it probably gave me some comfort in the moment, it really did nothing to assuage my loneliness. Nothing did. There were plenty of people in my life. It didn't matter.
But early this year I met others with DID at an inpatient program. And that was immensely helpful. The primary difference is in my own knowledge about my disorder.
"The message forums were way too overwhelming for me."
Me too. In some ways they did as much harm as they did good for me. That's part of why I decided to write about DID in the first place. I want to provide the very thing I needed back then and didn't find.