To those newly diagnosed with did-read this

This was taken from

Vwoopvwoop’s blog

It really speaks to us so we are putting it here.

Emily

Newly diagnosed person,

Please continue to breathe as you read this. I know it’s difficult. Your mind is overwhelmed with thoughts about how, why, what if… and that won’t go away fully, but if you can try to focus on these words for the duration of the letter, then I promise you can get right back to freaking out afterwards. Deal?

Perhaps someone you trust (a spouse, a doctor, a beloved pet) has told you that it seems likely you have Dissociative Identity Disorder. Initially you may feel a great surge of righteous disbelief — this is normal, so feel free to run with that feeling for a day or two. My personal suggestion is no more than three days, however, because after that not only do you seem like a pratt who won’t listen, but also your tantrums start to *further* convince people there’s something wrong with you.

Hopefully by the time you’re reading this, you’re calm enough to consider the possibility of DID. I promise, it is not as scary as it sounds.

Clearly there is a reason that someone has decided to mention the fact that your personality seems inconsistent. It seems normal to you, because it’s what you’ve always known. And that’s one of the reasons it’s nothing to panic about — you’ve always been this way, therefore there is no immediate action needed on your part. The biggest thing you can do right now is really think about it and see if you come to agree with them.

Do you have wildly different ways of acting? You may say yes, of course I act differently at a party than when I’m at work. Agreed, that is normal. In fact, that’s something you need to remember as you ask yourself all these important questions — these responses are *normal*. It’s normal to act differently in different situations. It’s normal to feel like a child sometimes, even though you are a grown adult. It’s normal.

No one is saying you’re crazy. Well, no one who knows what they’re talking about, anyway. DID is a very particular kind of response that people have when they’ve been overwhelmed in their lives. All it means is that your brain was better at acting differently in challenging situations long ago, when you were a child. In a way, DID is something that stems from how resourceful children can be when they are too young to deal with things that are adult in nature.

There is an understanding in the psychology community nowadays that DID often (note: not *always*, but most frequently) stems from abuse in childhood. Emotional abuse, physical abuse, and sexual abuse are the three that are more likely than anything else to make a child react by becoming someone else for awhile. Maybe this sounds like something you experienced, and maybe it doesn’t. What’s traumatizing to one person may not even register on someone else’s scale, so there is no specific way to measure trauma.

You may have noticed that it’s hard to focus sometimes, or that you get sleepy at very inopportune times. Some people experience a personality “switch” like falling asleep. You may not be able to remember a large part of your day, and perhaps your memory has always been faulty. A lot of people experience missing time when they are experiencing a personality switch.

You may be terrified about what it means to “switch”, but you shouldn’t be. It doesn’t mean anything outlandish or bad, it just means that your brain is working hard all the time to make sure that you’re always functioning, even when you feel like you can’t. That means that even when you feel too sad to act happy, your brain is able to provide the resources you need to act happy anyway. A lot of people can do this, not just people with DID, but oftentimes people with this disorder don’t do it consciously, their brain does it for them.

In most DID people, there is one particular side to the person that is very depressed and suicidal. Does this sound like something you’ve experienced? Lots of people go through life and have moments where they feel that way, but in a person with DID, often those strong feelings are just below the surface, all the time. It makes sense that you would feel this way if you have DID, because it’s exhausting to the brain to maintain a “system” of personalities that are appropriate for every situation, while the core of you has deep difficulties that haven’t been addressed. Oftentimes people are misdiagnosed with depression, bipolar disoder, borderline personality disorder, or even schizophrenia before they get the correct diagnosis of DID.

Having multiple personalities does not make you a monster, or even a spectacle. Hollywood is wonderful for turning misunderstood things into dangerous things. No one is going to know, just by looking at you, talking to you, or being your friend, that you have DID. Movies make us seem like scary people with violent outbursts and grudges against teenagers in beach houses, but we’re not. Honestly, people who have DID are more likely to be quiet, kind, and thoughtful than anyone else because their brains are wired that way. Quite literally, the bad things that can be a part of humanity –the anger and violence — those things are deeply repressed in DID people, to the point where they often become pushovers. There is nothing to be afraid of, this diagnosis does not turn you into a danger — you are as kind, thoughtful, and loving as you were before you even knew about DID.

There are several important things to note about this disorder.

First of all, it rarely every gets diagnosed until there has been a breakdown of sorts. This is unfortunate, because the breakdown is full of fear and turmoil, and the diagnosis would be able to help a person understand why all of it was happening. If your brain is working extra hard to keep your life running in an orderly way, you’re going to be tired much of the time. You’re going to feel exhausted after the most mundane tasks, because your internal system is having to regulate itself so precisely that all the energy is used up. Eventually there will be a moment when the system cannot maintain itself perfectly, and then the DID person experiences all the things their brain had been trying so hard for so long to keep from them. They may fall into a deep depression and experience lost time. They may lose the sense of who they are. They may, in fact, have an internal personality come to the forefront to take over for awhile and do damage control.

Whatever the breakdown looks like, it requires a lot of kindness and understanding from friends and employers because there is no way to calm a person in the throes of a DID breakdown without knowing what’s wrong. And of course, they aren’t going to know what’s wrong. The DID person will feel as though their life is falling apart and they don’t know why, they just know it’s intense and they can’t help it. They may experience suicidal thoughts and actions. They may be unable to perform work duties they used to be able to do easily. It may become difficult even to remember to eat or bathe or wake up from sleeping. It’s a horrible time and hopefully someone can come across the correct diagnosis.

Please, if you know or love someone with DID, be kind to them when they seem irrational, because their inner turmoil is too confusing for them to explain, but they need you. If you have DID, please try to be patient with yourself when nothing makes sense, because you’re okay, it’s normal for you, and just breathe through it as much as you can.

Another very important thing to note is that there is no quick fix for this disorder. There is a learning curve for the patient and their spouse and anyone they choose to tell about it (most people are not open about their diagnosis because it is stigmatized). There is going to be an initial chunk of time spent trying to identify the insider roles and understand their names if they have them. Sometimes it’s easy, because you’ve known them for a very long time, you always *sensed* them there, and maybe you even know their name instinctively. Sometimes it’s very difficult, because you have no idea how to communicate with different parts of your brain.

It won’t always be as difficult as in the initial stages, I promise. Once you know your diagnosis, you can research and learn a great deal about how to live with it. The scariest part is not knowing what’s wrong with you — but once you have that, once you know — oh, ok, I have Dissociative Identity Disorder — then you have a vast amount of learning available at your fingertips, and also a community of others who you can easily find online, who are struggling just like you, and who can help you move toward healing.

Having DID is not a curse, it’s just a description of how your life has always been until now, only you never knew it. Perhaps you suspected. Maybe you realized a long time ago that you’re not quite like everyone else. Maybe you realized it when you had difficulty in sexual situations that you couldn’t explain. Maybe you knew something was odd about the fact that you can’t walk into a clothing store and decide on what you like and don’t like (or even if you want to buy guys’ clothes or girls’). Maybe sometimes you feel like talking in different ways around different people, sometimes you’ll swear a lot, sometimes you’ll hate to swear. There are lots of ways you may have noticed little signs in your life that seemed out of place. None of these things are harmful, and most people will just write them off as “kooky”, so don’t be concerned with how you are perceived.

Lastly, there is a lot of work to do once you know you have DID. But that comes later.

First you have to decide if you think this diagnosis fits you. For me, personally, this diagnosis was a relief to hear. It was also very scary, because I wasn’t educated about what it really means — I only knew what movies portrayed about it, or the United States of Tara (good show, but over-dramatized). Now that I feel I understand it better, I want to help other people to understand it. And though it would be nice to teach the world how to re-envision this disorder, I’d rather start with the people whose lives it touches most directly — the people who have the symptoms, the people who are struggling to find out what is wrong with them and why their life is falling apart. In other words, the people who are just finding out what DID is, and how their life is going to be changed forever because of this diagnosis.

I know it seems scary, but it doesn’t have to be. Fear of the unknown is natural. Once you can hear from others about how much is *known* about DID, and how your life can go on, and even blossom because of (or despite) it, hopefully your fear and worry will turn to curiosity and acceptance. It’s a bizarre journey, and one that most people don’t get to experience — but it is ultimately incredible if you can embrace who you are. Being afraid of yourself is a waste of time. Being brave and accepting, yes, I am a person with DID — that can be transformative in positive ways.

The first step of a journey is the hardest to take, but it’s very possible that accepting this diagnosis is going to help you get your life back.

Sincerely,

Someone on the Journey