The decision to come out as someone with Dissociative Identity Disorder is a deeply personal one. Many, perhaps most, people with DID live in near silence about their disorder. They may tell only their families, or no one at all. Some choose to share their Dissociative Identity Disorder diagnosis not just with family but also friends. I belong to a smaller group of people who publicly say, “I have DID.” What’s comfortable for you may be unhealthy for someone else, and vice versa. With that in mind, what I offer you today isn’t advice on whether or not to reveal your DID diagnosis, but a short list of DOs and DON’Ts – things to keep in mind when considering disclosure.
Photo by H. Michael Karshis
DO:
- Consider your motive. What do you hope to achieve by revealing your diagnosis? You’re more likely to get what you want if you have a clear understanding of what that is. Additionally, your listener needs to know why you’re saying, “I have DID.” Otherwise, they may not know how to respond.
- Think about your audience. Who are you going to tell? A friend? A love interest? Allow the listener’s identity and their role in your life to help shape your delivery. The way I told my partner about my diagnosis was significantly different from how I tell casual friends now, for instance. The depth, tone, and emotional revelation in your disclosure should be appropriate to your relationship.
- Plan ahead. When and where are you going to come out? What will you say? It might help to write your own list of DOs and DON’Ts for this part alone. It’s best if you and your listener are relaxed. Think about what will engender safety and comfort, and what will hinder it.
Photo by Ed Yourdon
DON’T:
- Apologize. Your disclosure isn’t a confession. By sharing your Dissociative Identity Disorder diagnosis in an apologetic or embarrassed way, you tell your listener that DID is something to be ashamed of. Be honest, but keep in mind that how you present DID to others will impact their perception of it.
- Ignore the risks. Once I disclosed my diagnosis to someone who responded, “People don’t want to hear about your problems.” I was crushed and humiliated. In retrospect, it was a careless choice on my part. I hadn’t prepared myself for such a caustic response because it didn’t occur to me I might receive one. Ask yourself, how might my listener respond? Then be realistic about the potential consequences of those reactions.
- Disclose under pressure. Some situations are beyond your control. But if possible, come out because you’ve weighed all the considerations and decided it’s what you want to do, not because you feel pressured.
Telling someone, anyone, “I have DID” is a big deal. If you choose to come out, take time to prepare. Think about what you might add to this list of DOs and DON’Ts for disclosing Dissociative Identity Disorder. And remember that you have the capacity to determine what’s right for you. Trust yourself.
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I have DID and am very careful about who I tell. Most people I just say that I have a mental illness and that I have anxiety and depression. I used to live in a Senior Citizens building and when I really got to know some of the other residents and they would say they had been depressed, I would tell them about my depression which would lead to suicidal thoughts and attempts. When my depression and anxiety would leave me housebound for days and days and I would then go to the common room and people would ask me where I had been, I would say I had been hybernating. I had a friend who told everyone in our church she had MPD (many years ago) and they all told her she was “possessed.” Now there is support for you. I mostly take the opportunity to educate the public about mental illness in general when I talk to people who are saying things that are WRONG!!! We’re all in this together and we need to break down the barriers.
Hi Diana,
Thanks for reading and taking the time to comment.
I thoroughly respect your caution when it comes to disclosing your DID diagnosis. For years I kept Dissociative Identity Disorder to myself and a very few people. Even the thought of revealing my diagnosis to others terrified me. And I rarely discussed it with those very few people I did tell. In fact, I went through a period when I refused to discuss it with even my therapist most of the time. It was a weighty, lonely secret. But one I didn’t feel I had the option of disclosing.
I’m not sure why I’m able to live completely out and open about my diagnosis today. I suppose there are a lot of reasons. But I haven’t forgotten what it felt like to need to keep my diagnosis as private as possible. It was almost like DID was a living, breathing, and highly vulnerable thing and I was charged with its protection. It’s dramatically different for me now, but I’m all too aware that my situation is rare. And I have respect for the choices of others, like yourself. Like you said, we’re in this together.
“I had a friend who told everyone in our church she had MPD (many years ago) and they all told her she was ‘possessed.’”
I don’t think I’ve met anyone with Dissociative Identity Disorder who hasn’t been told, at one time or another, that they were possessed. I remember the first time someone told me. It hurt me deeply and took a surprisingly long time to get over. It’s interesting to think about now, because if I heard the same thing today I doubt I’d care much at all.
Hi. Caroline is my pen name. I have DID and am now in production for publishing a book, taken mostly from my journals of therapy sessions. I used a fake name for the book because I still feel uncomfortable disclosing my DID to others, but I wrote the book to hopefully help people like me. It’s called “Coming Present: Living with MPD/DID and How My Faith Helped Heal Me”. I hope to get through all the production stuff and have it available for Christmas sales. I know from experience that telling someone can have consequences. I too have been told I was possessed, faking, a liar, seeking attention, etc. But I have had the best therapist, and she has helped me to become confident in myself, and I have shared the truth with a few more family and friends. I spent decades in silence, and I don’t want others to wait so long to get psychotherapy. Telling my children was probably the hardest. I don’t think I could have written the book under my real name, and I have been in therapy over 9 years. Even though I am now said to be integrated, I still consider carefully who I tell.
Hi Caroline,
Congratulations on your book! I don’t think there are nearly enough resources for people with Dissociative Identity Disorder. I’m glad there are writers like yourself helping to meet the deman for information and support.
“I know from experience that telling someone can have consequences.”
Yes. I will go further though, and say that disclosure nearly always has consequences. Sometimes those consequences are painful, sometimes they’re healing. But telling someone you have DID is not the same as telling them you’re an accountant, or the mother of three, or that you paint in your spare time. It’s a big deal. And I think it’s appropriate to approach disclosure with caution.
But I also know that for some people, a very few, living in silence is far more uncomfortable than being called a liar or attention seeker. I’m still a little stunned to find myself in this category of people – those who are “out” about having DID. But here I am.
Thank you, Caroline, for commenting. I’m looking forward to reading your book!
I was already out as I’d written about three of my selves in my books, most notably Nobody Nowhere. But because my diagnosis was autism and I didn’t have a formal dx of DID at that time, I progressively was encouraged to not talk about ‘that stuff’ and just talk about the autism side (even though the two were so bound up). There was a clear stigma/division, that ‘well you’re so useful re the autism side, so please don’t tarnish it by requiring us to confront the mental health issues you had/have’.
I was formally dx’d with DID this year and because I’d already written about it, people didn’t find the dx so hard at all. We’ve come a long way that people can understand one can be blond or diabetic or autistic for that matter and also have DID.
I generally don’t tell new people I meet though. Its generally on a need to know basis. Otherwise I might say that i live with PTSD and dissociation rather than DID. Because people who aren’t multiple just struggle to imagine the experience, perceptions of the person with DID.
Hi Donna,
Thanks for your comment.
“We’ve come a long way that people can understand one can be blond or diabetic or autistic for that matter and also have DID. ”
Good point. Honestly, people are far more easy going about it than I ever expected. The stigma and mythology around Dissociative Identity Disorder is still alive and well, but I don’t encounter it nearly as often as I would have predicted. And even when I do, it’s so heavily overshadowed by all the support and understanding (support and understanding I wouldn’t receive if my diagnosis were still a secret, mind you) that it doesn’t hurt me like it used to.
“Because people who aren’t multiple just struggle to imagine the experience, perceptions of the person with DID.”
True. It’s difficult enough to understand when you have it, let alone when you don’t. Even so, some of the most helpful insight about DID I’ve ever received has come from those who don’t have it and don’t even know that much about it. In some ways, their lack of knowledge is a good thing. They come to DID with fresh eyes, and a unique perspective.
I managed to quite unintentionally shock the hell out of a guy I knew through school when he decided to tell me he had DID. In retrospect, I realize how much he’d wound himself up to talk about it. He said he had DID, and I nodded and said, “Oh, one of my closest friends from high school does, too.”
Of all the things I could have said in response, I think that must have been the only one he hadn’t psyched himself out to expect.
He and I actually weren’t very close. He had been trying to work on getting ready to tell his family and close friends about his diagnosis, and his psychologist suggested he might want to find someone whose reaction wouldn’t hurt him so he could practice disclosing to a ‘new’ person. He decided that I was nice enough that he didn’t think I’d overreact. I was flattered that he thought of me that way, but man did the idea scare the hell out of me! I mean, if he’d guessed wrong, someone he only knew from taking a class together could have gone around blabbing it to all and sundry!
~Kali
Hi Kali,
Thanks for your comment.
I can understand why he was surprised! People often don’t take news like that in stride. That isn’t to say they’re usually dismissive or rude or negative in some way. It’s just that often they feel awkward and aren’t sure how to respond. Still, since coming fully out of the closet about DID I’ve been surprised at how accepting and just generally cool people are about it. Even if they do feel a little awkward, as long as I don’t it helps.
Hello. I am scared out of my mind to tell anyone, and it’s been eight months since my diagnosis. Only my therapist and husband know and while it makes sense to him, he hasn’t completely accepted it. He is, however, very supportive.
Our town is very conservative, I have no close friends, and I feel it would be more damaging to my family if I revealed it. I’m sticking with depression and anxiety for now.
Thank you for the do’s and dont’s. That is extremely helpful should I ever decided to tell anyone else.
Lisa
Hello, I was diagnosed in 1990 with a whole host of mental illnesses. When I was 14 I watched while my mother took a shotgun, loaded it with a cartridge filled with buckshot and litereally blew her head off. I was supposed to die with her. At the age of 7 my mother made me make a suicide pact with her. We used to discuss different methods of suicide. I come from a number of small towns, and also from a long line of suicides. To date there are five family members who have suicided. Obviously there is a mental health issue in my family. I have a dissociative disorder, personality disorder, clinical depression, suicidal ideation, (it seems normal to me) post tramatic stress disorder, anxiety disorder, eating disorder, panic disorder, psychotic disorder and on and on. I have finally stopped being ashamed of my mental illness. I am back in college, and I have to write a thesis. I’ve decided to write about mental illness and the stigma attached to it. I had to come out in class, and at first I was angry that in order to write this paper I had to expose myself. I’m okay with it now. I am not a mental illness, I am a person, that has special insights into the world. I live in a multi-dimensional world. It is unnerving sometimes to find out that I have been “away”, but I just try to relax and know that someone in here is always “here” even if I don’t know about it. Someone is always driving, and I’m now 46 years old. We’ve never been in trouble with the law, and I’ve never heard anything negative regarding the behavior of others. I’m not ashamed anymore. This is an illness, just as diabeties, I can’t help it, I can just accept it and move on. Thanks for this opportunity to share myself, and thank you for sharing too.
Hi Lisa,
Thank you for your comment.
I want to reassure you that though eight months feels like a long time, in terms of adjusting to the diagnosis of Dissociative Identity Disorder, eight months is not that long at all. It took me two years just to stop reeling, and another three before I was able to finally come to terms with the diagnosis. And while everyone’s experience is unique, and there are those who manage to bounce back fairly quickly, it’s common for this diagnosis to be initially destabilizing.
Making peace with the diagnosis does not have to mean disclosure. Not everyone is comfortable with sharing something so personal. And that’s not only ok but completely understandable. I find it very hard to live with such a huge part of myself hidden. And since much of my work focuses on humanizing and demystifying DID, keeping my diagnosis private isn’t practical. But for many people, like you, the risks of disclosure outweigh the potential gains. Giving those risks their due respect is wise, I think.
Hang in there. It gets better.
Hi Marilyn,
Thanks for reading and taking the time to comment.
I applaud you for shedding the shame around your mental illness. I’m guessing it’d be almost impossible to emerge from a childhood like the one you briefly describe unscathed, in perfect mental health.
“We’ve never been in trouble with the law, and I’ve never heard anything negative regarding the behavior of others.”
That’s a remarkable record! Though I’ve never been in trouble with the law either, I’ve heard plenty of negative about alters’ behaviors … and my own too. And I don’t imagine I’ve heard the last of it. Even so, though I may sometimes feel remorse about things we’ve said and/or done, I am not ashamed of having Dissociative Identity Disorder. Like you said, it’s an illness.
to lisa-
totally understand. i also live in a conservative rural area where it might not even be safe to talk about this. i had never heard of this and misdiagnoses is very common. i love my husband but he will never believe in this since i was medicated for other things and did not go well. you are not alone. hang in. love, judith
Hello. I have never been diagnosed with DID but I know myself that I have it. I haven’t told anybody exept my own mother and she thought that I was possesed. This is the first time since then that I have said anything about it but it’s good to know that I’m not the only person with this. I’ve been aware that I have DID for a long time and I always thought I was a freak and wrong,and if i told anybody else I’d be thrown into a padded room. It’s good to know I’m not the only one
Hi Joe,
Thanks for your comment.
Though most people don’t have Dissociative Identity Disorder, you’re certainly not alone. Studies estimate that DID affects up to 1% of the population, and some suggest even more. It sounds so puny – 1% – and percentage-wise it is. But when you consider how many people 1% of the population is, you see that there are a lot of human beings out there that share your struggle.
You’re also not alone in having been told you’re possessed. I’ve actually not yet met anyone with DID who hasn’t been told they were possessed at one time or another. I’ve also been told I was “channeling” spirits. It’s not unusual to hear that kind of thing. In my case, both people meant well, but sometimes those comments are rather mean-spirited.
Thank you for your article on DID. It takes a lot of courage for people to tell their story about DID, but I believe it is worth it when people are ready. By telling one’s story, people are breaking the silence around this diagnosis and the trauma that causes it.
What remedies are there if you have been wrongly diagnosed? (United Kingdom)
How can you get the bastards to retract a diagnosis, because it could restrict your employment opportunities. Furthermore, they do not keep the information secret. They leak it deliberately and it could come into the hands of your enmies which will use it to demean you!
Hi Andy,
I’m not sure how a diagnosis can restrict your employment opportunities unless you’re voluntarily reporting it. After all, your clinician doesn’t have to know where you’re applying for work. So even if this person were so grossly unethical as to go about deliberately trying to keep you from getting a job, how would they know who to tell?
I think I must be missing something. Can you give me a little more information about your situation?
Hi,
I love your blog and I will sure post/read more. I dont have DID, but my ex boyfriend has.
To be honest during the whole relationship of X years I thought I was going crazy. (He did twice mention something, lets say something in the line of 2 other alters and futhermore, he was very secretive with what he has). I never believed in DID so I researched all the other ”disorders” but I never felt at ”home” there.
All the signs, symptoms, the change in body structure and so were there. I saw him switching in front of me, so many times (and thought wow I am seeing things, his body changed, I am going crazy), the memory loss and the ”lying” about things and I literally went crazy. And of course he just gave excuses or blamed me for it all and stated he did not have that type of disorder I though he had…
Until he made a very big mistake. It took me months to figure it out, but I was finally sure I was on the wrong path with the other disorders. It was right in front of me, but I guess I was not ready to believe in DID and the way I know it was DID. Before I could not leave, because something was always pulling me, to stay searching and to open my eyes……
I wrote him I forgive him and if he is ready and wants to talk to me he is welcome. I feel sad my ex boyfriend did not trust me. Due to DID he lost a lot of relationships and I can understand how he is afraid people might find out. He knows – even if I have every reason in the world to hate him for the way I was treated by the alters that hated me- I never gave up trying to find what was/is wrong. I feel I have answered the call and I can let go of the pain….
I think it takes a lot of courage to tell and I guess if I had DID I would think really hard whom I would tell and can trust. I think that due to the people I knew/know in my life and a mild disorder I have I was open and did not cared if he had a disorder/ illness I was researching. If I never knew those people and did not have a mild disorder I think I would have left long time a go thinking he was a jerk.
I wish you all well in your journey. poppy