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.

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