PTSD and Disclosure

Rather than continue with the demoralising and exhausting task of writing down all the little things i struggle with for my Disability Living Allowance form, I’m going to put it aside for the night and write a blog post that’s been going round my mind for a week or so.

I have Post-Traumatic Stress Disorder and I’ve been fairly open about my diagnosis since about six months after I received it (prior to that I kept things between myself, my therapist, my girlfriend and some carefully chosen close friends). If I feel up to it, I will describe how my PTSD affects my life, how I cope with it and even what it was like at its worst. I can and will talk about what it’s like because I know that there’s a heck of a lot of other people quietly going through the same thing and *someone* has to be willing to talk about it and that might as well be me.

There’s something that I don’t talk about though as a rule. I don’t answer any form of the question “What caused your PTSD?”

Unlike most other mental illness, PTSD is caused by and about something that happened to a person. Depression typically isn’t “about” anything at all, it just is. Anxiety can come out of nowhere. But PTSD is an illness that means that at some point in your life something awful has happened to you, typically something that made you feel like you were going to die. An event or multiple events that either snatch away suddenly or slowly erode your sense of being safe and leave you with the feeling that you will never be safe again – that’s how you end up with PTSD.

So, people are curious. And I sort of understand that. But. Please, please if someone you know discloses to you that they have PTSD do NOT ask them “What caused your PTSD?”. Don’t ask “How can you have PTSD?” or “Why do you have PTSD?” or “How did this happen?”.

Just don’t.

Got that? Don’t.

Even if you are really close to that person. Even if you’re shocked. Even if you can’t think of anything bad that ever happened to them. Do. Not. Ask. What. Caused. Their. PTSD.

If they feel able to tell you, they will. If they want to tell you, they will. If you really need to know, they’ll tell you.

It takes a huge amount of courage in our society to admit to struggling with mental health problems at all and PTSD is a particularly difficult mental health problem to disclose for many reasons. Not least among them is that PTSD itself can make trusting people incredibly difficult and the fear of perhaps having to say out loud what happened to cause it and risk triggering a flashback. There’s also the fear of not being believed – a significant and loud minority of people think PTSD is a “made up illness” invented either by people who wanted to claim disability benefits or by drugs companies in order to sell more pills. Then there’s the shame – the feeling that your past shouldn’t still be affecting you after all this time. It takes bravery to say to anyone “I have PTSD”.

So, if someone tells you about their PTSD please remember they’ve thought about it for a long time and decided they want you to know. During that thinking time they’ll likely have thought about how much they want to tell you about the cause(s). They may have decided, as I have, that you don’t need to know.

Asking puts people in the difficult position of either refusing to answer a direct question or giving you sensitive information at a time when they feel vulnerable, scared and disinclined to trust people.

So; I’ll turn this round on you. Why do you want to know?

  • You’re just curious / just making conversation. That clearly isn’t as important as making sure the person with PTSD feels safe. Try saying something supportive instead like “That sounds very hard for you. Is there anything I can do to help?” or “Would you like to talk about it?” or even “I’ll make a pot of tea”
  • You want to help and feel you’d be more useful if you knew exactly what you were dealing with. See above for ways to help. The person with PTSD is better placed than you to judge how much you need to know. Ask specific questions like “Would you like me to read reviews of the film before we go? What kind of content might you need warnings for?”
  • You don’t believe them because you’ve never seen or heard of anything *really* bad happening to them. First off, it’s close to impossible that you have actually been with this person every second of their life unless you are their conjoined twin – and even conjoined twins could have been affected very differently by things that happen to them. Lots of things could have happened while you weren’t watching or you may have misunderstood the significance of events that happened while you were. If you don’t know what the bad thing/s is.were, then perhaps the person has deliberately kept them from you. They have the right to do this, to protect you or them or someone else. You don’t have any right to this information until and unless they want to tell you. If you’re surprised say something like “This is surprising news. I thought you were okay / I knew things were bad but didn’t know things were this bad” or stick with being sympathetic and helpful – even if you don’t believe it. It’s better to assume they’re telling the truth than accidentally confirm their belief that they can’t trust anyone and should keep these things to themself.
  • You’re worried that something you did caused this. That worry can wait. Be sympathetic and helpful or excuse yourself if you can’t. I understand the worry but it’s not a question for the first time someone talks to you about their diagnosis.
  • You can’t think of anything else to say. Be honest and say “I don’t know what to say”

What I want you to know about PTSD before you encounter someone else with the diagnosis – especially someone newly diagnosed – is that you need to trust them to work out what they want to tell you and when. On their terms, not yours.

My terms involve not telling most people what happened. My own family don’t know what happened and I intend to keep it that way until and unless it ever feels appropriate to actually tell them. Your terms or your friends’ terms may be different but that’s ultimately up to each person living with PTSD to decide, not the people around us no matter how they know us.

Advertisements

5 thoughts on “PTSD and Disclosure

  1. Good luck with the rest of your DLA form!

    Em wrote about how most people’s reactions to her PTSD were, “Oh… so where did you serve?” – the idea that PTSD is all about gunfire and explosions, like it is in the movies.

    I think there’s another issue here, which is the idea that talking about our emotional problems always helps, people can take disclosure as a confidence, as opposed to pure information, and part of “So what happened to you?” may be meant as a naive offer of a listening ear; “You can talk to me about it…”

    (In fairness, depression and anxiety are very often reactive, but in far more complicated ways and the symptoms are much less often focused on particular events. Even schizophrenia – where genetics certainly play a part – is far more common in survivors of childhood abuse.)

    • Thanks for the comment and link.

      I think people are beginning to accept that you can’t cure depression by pointing out all the reasons why someone “ought” to be happy. Unfortunately, I and others I know have encountered people who seem to believe that you can stop having PTSD if someone convinces you that what happened to you “wasn’t that bad” (or worse, tries to convince you it didn’t happen). This is a big part of the reason I don’t talk about what happened – I can’t tell by looking at someone whether they’re going to say “Wow. That’s awful. I’m so sorry, I had no idea! How can I help?” or if they’re going to say “But that doesn’t sound so bad. Clearly you must have known to do, X, Y and Z. You can’t seriously mean you were afraid for your life?” or “But that happens to everyone!” or “That didn’t happen”.

      Anyway, I wanted to link to two posts of yours that I could tell when I was writing this were informing much of what I wrote. You wrote these two posts on supporting people currently experiencing domestic violence: http://blobolobolob.blogspot.co.uk/2012/09/how-to-support-people-in-abusive.html and http://blobolobolob.blogspot.co.uk/2012/10/how-to-support-people-in-abusive.html which had a very strong emphasis on believing what people say and treating them as trustworthy, responsible people who can make their own choices. In my blog post I’m applying much the same ideas to people who’ve already lived through something and are now ill because of it – the illness doesn’t mean we shouldn’t be trusted to make our own choices and making clear to us that we are being trusted and do have choices is important.

      • I think something that motivated me to write so much about my experiences was that the idea that something has to be on some special plane of awfulness in order to “count” as abuse or to count as traumatic, was a huge barrier to recovery. I’ve been very fortunate – three years on, my PTSD is a bit like an old injury that only plays up in bad weather. But for many months, I was having flashbacks, panic attacks and nightmares, and not putting a name on it because I hadn’t been in ongoing fear of my life, I hadn’t been badly injured and so forth. It just wasn’t bad enough.

        But by the same token, I had put up with the abuse because it didn’t seem bad enough – even though now, when I look back, it was absolutely dreadful. So I understand the great danger in imagining that something isn’t and wasn’t “that bad”.

        Thanks for your comments about my posts – I’m really glad that they’ve been useful to you. 🙂

  2. Pingback: A Representative Sample of Search Terms That Got People to My Blog | yetanotherlefty

  3. Oh, so much truth. It’s a pain in the ass when people ask “but WHY do you have PTSD?” because that catapults me straight back in my memories, and that is truly unpleasant.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s