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moonvoiceAfter some thought, I have decided to make this post public. This is only my opinion on the matter, as a single person with PTSD. I realise that others might not feel the same way; but this is how I feel about it:
***
Someone essentially said the other day; 'I look at traits in other people's disorders based on what they write / say and from there diagnose myself / identify with those disorders and tell other people that I have the disorder, or have something like the disorder; is that wrong?'
I don't know about 'wrong' all the time, but I certainly think it's harmful, and I certainly find it personally offensive. It's not an uncommon attitude, and I've encountered it before, both online and off (though way more often online). So I've decided to write about why I don't like it, personally (hey, you might have a mental illness yourself and love people who do this, it could happen).
I've lost count of the amount of times people have wrongly assumed they've had PTSD based on me recounting a handful of symptoms or reading a handful of posts. It's been happening for years. It's been happening since 1998 for me.
They've seen me say 'I have nightmares' and think 'well I've had nightmares! I must have PTSD too!' They've seen me say 'I get flashbacks on a regular basis' and they think, 'well I've had flashbacks, I must have PTSD too!' They don't stop to think that the symptomology of PTSD is complex and quite specific; nor do they stop to realise there are many other trauma disorders aside from PTSD (even Bones gets it wrong, having Sweets (a brilliant psychologist; apparently) recently and speculatively diagnosing himself with PTSD vs. PTS - the 'D' only comes when you develop the symptoms weeks to months down the track, not immediately after the event, in which case it's generally just PTS and not a disorder - don't take my word for it, do some research).
I'm sure some people have rightly thought they might have PTSD based on the accounts of others and then gotten a diagnosis, or found out that they had it in some other way. Everyone else is just using something I talk about to try and understand something in themselves, which is fine. I think it's fine as long as you're not telling everyone else that you have those disorders without actually knowing you do. As long as you're not authoritatively speaking about those disorders, or even telling professionals that you do have that disorder based on what other people have said about their own experiences.
As soon as you open your mouth and say to someone else 'I have PTSD' (with the subtext 'because X person talked about it a few times and geez I really related to that!'), you are trivialising me and my illness. You are using me to give yourself a label that might not even be appropriate. And you could potentially harm your own chances of recovery (depending on what you've got), and you certainly harm my ability to be treated seriously if you don't have that disorder and people take your account as a benchmark of accuracy.
Basically, I and my posts are not your fucking symptoms checklist.
The only official way to get a diagnosis of PTSD is to get an official diagnosis of PTSD. Yes, that's a matter of privilege. It costs money in some parts of the world to afford the stupidly long, arduous surveys to find out if you've got it or any other mental disorder or illness. In Australia, I was lucky enough to be covered by public healthcare and never had to pay a cent to get that official diagnosis. I wish others had this access too. Perhaps they'd be more likely to if people took mental health more seriously. Perhaps mental health would be taken more seriously, if people didn't wear disorders like fashion accessories. It's certainly a very complex problem, way more complex than this post; but the attitudes I'm pointing out here - I believe - do contribute to the problem of why mental health is marginalised and trivialised.
But you don't go and fight or subvert the privilege-of-diagnosis or the problems-of-psychiatry (which are many) by assuming you have a major, major disorder off the account of another person who has that disorder and is trying to scrape together the energy to write about it in order to find support, reach out to others, and try and give a picture of what this beast is like to actually live with. When you do that; you don't attack the system, you attack me. When you say you have a disorder, especially if you DON'T actually have the disorder - you trivialise the disorder that I actually have, and fight to survive on a regular basis.
When you assume you've got a disorder you don't, based off my experiences, and tell people about it; you make it about you, and you forget that you are using someone else's words and experiences to make an assumption that might not even be (might not even likely) be true. And when you tell other people you have X disorder based on your interpretation of my experiences (or the experiences of others) who do actually have X disorder, you give other people an inaccurate impression of what that disorder is like; and you let us down in the process.
Think about it this way. Say there's a person who is a compulsive hoarder, and writes a blog about their experiences with this disorder in order to try and overcome say...the shame associated with it, and the silence associated with most mental illness. And then I assume; 'oh, well, I like to collect X, this must mean that I'm a hoarder.' I then go around - as a functional person - telling people that I'm a hoarder based off an assumption that neither means I'm a hoarder, or that I have the dysfunctional disorder that compulsive hoarding generally is. Not only that, but when I tell them, I might say something like 'oh I know a hoarder, and I'm exactly like them / have their symptoms / they like to hoard things too.' I've picked and chosen what symptoms fit me and what don't, and I give many people the impression of functionality that isn't there / symptoms that might not exist in the actual disorder / and who knows what else.
Let's say the actual hoarder meets this same person who was told about hoarding from a non-hoarder who has made a harmful assumption. They have a complex array of symptoms that makes them varying levels of dysfunctional. Now they get attitudes like; 'oh you must have a really severe case,' or 'I know someone else with this disorder and they seem fine! Why aren't you fine? Is there something wrong with you?' or 'I like to collect things too! Isn't that just a fancy way of saying we like to collect stuff? I can't believe they apply mental disorders to things that aren't even disorders!' or 'I've met hoarders before and they were nothing like you, you must have a different disorder / be a malingerer / be uninterested in recovery.'
Basically, when I or anyone else goes around saying we have disorders we don't have, based on poor research, information collection, or anything else - we create situations where people with the actual mental disorders can be harmed, dismissed, wrongly treated and so on.
Considering that the mortality rate of mental illness is already so high, considering that mental illness is frequently debilitating and certainly leads to a lower quality of life for just about everyone who has them (except maybe the people who don't consider themselves to be mentally ill even with a diagnosis, which happens), considering that mental illness already causes people to be stigmatised, ostracised, othered, isolated, ignored and mistreated: When you, under the guise of being my friend or acquaintance, take my symptoms and use them for your benefit, you are doing something offensive, stigmatising, othering and ignorant. If everyone in the world did it, I'd be fucked. Well. More fucked. I've already got the PTSD to deal with at any rate.
*
(Comments screened, because I don't have the right brainspace for public comments; however I may unscreen comments down the track. Let me know if you're okay with this).
***
Someone essentially said the other day; 'I look at traits in other people's disorders based on what they write / say and from there diagnose myself / identify with those disorders and tell other people that I have the disorder, or have something like the disorder; is that wrong?'
I don't know about 'wrong' all the time, but I certainly think it's harmful, and I certainly find it personally offensive. It's not an uncommon attitude, and I've encountered it before, both online and off (though way more often online). So I've decided to write about why I don't like it, personally (hey, you might have a mental illness yourself and love people who do this, it could happen).
I've lost count of the amount of times people have wrongly assumed they've had PTSD based on me recounting a handful of symptoms or reading a handful of posts. It's been happening for years. It's been happening since 1998 for me.
They've seen me say 'I have nightmares' and think 'well I've had nightmares! I must have PTSD too!' They've seen me say 'I get flashbacks on a regular basis' and they think, 'well I've had flashbacks, I must have PTSD too!' They don't stop to think that the symptomology of PTSD is complex and quite specific; nor do they stop to realise there are many other trauma disorders aside from PTSD (even Bones gets it wrong, having Sweets (a brilliant psychologist; apparently) recently and speculatively diagnosing himself with PTSD vs. PTS - the 'D' only comes when you develop the symptoms weeks to months down the track, not immediately after the event, in which case it's generally just PTS and not a disorder - don't take my word for it, do some research).
I'm sure some people have rightly thought they might have PTSD based on the accounts of others and then gotten a diagnosis, or found out that they had it in some other way. Everyone else is just using something I talk about to try and understand something in themselves, which is fine. I think it's fine as long as you're not telling everyone else that you have those disorders without actually knowing you do. As long as you're not authoritatively speaking about those disorders, or even telling professionals that you do have that disorder based on what other people have said about their own experiences.
As soon as you open your mouth and say to someone else 'I have PTSD' (with the subtext 'because X person talked about it a few times and geez I really related to that!'), you are trivialising me and my illness. You are using me to give yourself a label that might not even be appropriate. And you could potentially harm your own chances of recovery (depending on what you've got), and you certainly harm my ability to be treated seriously if you don't have that disorder and people take your account as a benchmark of accuracy.
Basically, I and my posts are not your fucking symptoms checklist.
The only official way to get a diagnosis of PTSD is to get an official diagnosis of PTSD. Yes, that's a matter of privilege. It costs money in some parts of the world to afford the stupidly long, arduous surveys to find out if you've got it or any other mental disorder or illness. In Australia, I was lucky enough to be covered by public healthcare and never had to pay a cent to get that official diagnosis. I wish others had this access too. Perhaps they'd be more likely to if people took mental health more seriously. Perhaps mental health would be taken more seriously, if people didn't wear disorders like fashion accessories. It's certainly a very complex problem, way more complex than this post; but the attitudes I'm pointing out here - I believe - do contribute to the problem of why mental health is marginalised and trivialised.
But you don't go and fight or subvert the privilege-of-diagnosis or the problems-of-psychiatry (which are many) by assuming you have a major, major disorder off the account of another person who has that disorder and is trying to scrape together the energy to write about it in order to find support, reach out to others, and try and give a picture of what this beast is like to actually live with. When you do that; you don't attack the system, you attack me. When you say you have a disorder, especially if you DON'T actually have the disorder - you trivialise the disorder that I actually have, and fight to survive on a regular basis.
When you assume you've got a disorder you don't, based off my experiences, and tell people about it; you make it about you, and you forget that you are using someone else's words and experiences to make an assumption that might not even be (might not even likely) be true. And when you tell other people you have X disorder based on your interpretation of my experiences (or the experiences of others) who do actually have X disorder, you give other people an inaccurate impression of what that disorder is like; and you let us down in the process.
Think about it this way. Say there's a person who is a compulsive hoarder, and writes a blog about their experiences with this disorder in order to try and overcome say...the shame associated with it, and the silence associated with most mental illness. And then I assume; 'oh, well, I like to collect X, this must mean that I'm a hoarder.' I then go around - as a functional person - telling people that I'm a hoarder based off an assumption that neither means I'm a hoarder, or that I have the dysfunctional disorder that compulsive hoarding generally is. Not only that, but when I tell them, I might say something like 'oh I know a hoarder, and I'm exactly like them / have their symptoms / they like to hoard things too.' I've picked and chosen what symptoms fit me and what don't, and I give many people the impression of functionality that isn't there / symptoms that might not exist in the actual disorder / and who knows what else.
Let's say the actual hoarder meets this same person who was told about hoarding from a non-hoarder who has made a harmful assumption. They have a complex array of symptoms that makes them varying levels of dysfunctional. Now they get attitudes like; 'oh you must have a really severe case,' or 'I know someone else with this disorder and they seem fine! Why aren't you fine? Is there something wrong with you?' or 'I like to collect things too! Isn't that just a fancy way of saying we like to collect stuff? I can't believe they apply mental disorders to things that aren't even disorders!' or 'I've met hoarders before and they were nothing like you, you must have a different disorder / be a malingerer / be uninterested in recovery.'
Basically, when I or anyone else goes around saying we have disorders we don't have, based on poor research, information collection, or anything else - we create situations where people with the actual mental disorders can be harmed, dismissed, wrongly treated and so on.
Considering that the mortality rate of mental illness is already so high, considering that mental illness is frequently debilitating and certainly leads to a lower quality of life for just about everyone who has them (except maybe the people who don't consider themselves to be mentally ill even with a diagnosis, which happens), considering that mental illness already causes people to be stigmatised, ostracised, othered, isolated, ignored and mistreated: When you, under the guise of being my friend or acquaintance, take my symptoms and use them for your benefit, you are doing something offensive, stigmatising, othering and ignorant. If everyone in the world did it, I'd be fucked. Well. More fucked. I've already got the PTSD to deal with at any rate.
*
(Comments screened, because I don't have the right brainspace for public comments; however I may unscreen comments down the track. Let me know if you're okay with this).
no subject
Date: 2011-02-03 02:10 am (UTC)When you say you have a disorder, especially if you DON'T actually have the disorder - you trivialise the disorder that I actually have, and fight to survive on a regular basis.
THANK YOU, THANK YOU, THANK YOU, THANK YOU x 100,000,000,000,000.
I was given an official diagnosis of PTSD in 2002 by a psychiatrist, following a suicide attempt where I wound up in a hospital. My symptoms were severe enough that I wanted to be dead, at that time, rather than live with them.
What I don't like is when people hear about things I live with and then assume because they've got a similar thing going on here or there - nightmares, anxiety attacks - that they 'totally' must have PTSD too. I've held my tongue when some friends of mine have self-diagnosed, because I don't want to come off like a 'bad' friend, but I do ultimately find it really fucking trivialising. I am not as eloquent talking about my symptoms as some others, and so I find when I do mention my symptoms at all, I'm not very good at getting across the absolute fucking horror that my brain puts me through some days. I kind of wish I could grab people by the fucking throat and show them the inside of my head and say "YOU SEE THIS FUCKING SHIT? I BET YOU HAD NO IDEA. STFU ABOUT SUPPOSEDLY HAVING PTSD BECAUSE YOU GET EMO ONCE IN AWHILE."
I'm not trying to trivialise that people may have anxiety attacks or depression or other things that need looking at, but PTSD is a very specific, complicated thing - especially C-PTSD which is the specific type that I've got - and I really, really hate it when people think they 'totally' have it too because they can relate once in awhile to things I say and don't even begin to hit the tip of the iceberg with.
THANK YOU. SERIOUSLY.
no subject
Date: 2011-02-03 02:16 am (UTC)I got diagnosed because I thought I was going insane. It's pretty much that simple for me. I didn't know what flashbacks were, but I was almost certain they were 'hey you're going to live the rest of your life in an institution.' So... yeah. Ironically, for the first three years of having an official diagnosis, I didn't believe I had it, I didn't tell anyone. It's not something I wanted to broadcast. There's a horrible amount of shame and stigma to deal with in general; without dealing with misconceptions caused by the media, and certainly without dealing with misconceptions caused by people who use us for the disorders we live with. :/
/uber-facepalm
Date: 2011-02-03 02:20 am (UTC)Anyone who diagnoses themselves off the internet has a fool for a doctor.
Re: /uber-facepalm
Date: 2011-02-03 02:20 am (UTC)Re: /uber-facepalm
Date: 2011-02-03 02:25 am (UTC)no subject
Date: 2011-02-03 04:06 am (UTC)That digression is mostly intended to express the fact that I really appreciate how important it is for you to point out just how harmful such misattributions are to the person espousing the illness, to people who genuinely suffer from it, and to society at large. It is nothing other than insidiously destructive, and people need to be made aware of it.
no subject
Date: 2011-02-03 04:42 am (UTC)I have serious issues with self-diagnosis. Or rather with people who self-diagnose for any form of illness, but particularly mental/emotional illnesses.
You can unscreen this if you want to.
In off the Latest Things page...
Date: 2011-02-03 05:30 am (UTC)So as a professionally diagnosed (add nine years of therapy) PTSD sufferer, I want to say...
THANK YOU.
Also, I really don't get people who suddenly decide, with little evidence, that they 'have' PTSD. They don't seem to understand that PTSD (and many other disorders) is the thing that does the having, as in, has got one in its clutches and will not let go. It's not fun, and it sure as hell isn't glamorous. We manage it (if we're lucky enough to be able to manage it), or it wrecks our lives MORE THAN IT ALREADY HAS.
And yes, folks who self-diagnose do a lot of damage.
Again, I thank you, and when I tell her about this post, my shrink will thank you.
Best
–Nic
(and feel free to unscreen)
Re: In off the Latest Things page...
Date: 2011-02-03 05:32 am (UTC)That is a very apt way of putting it. It's not exactly something one shrugs on and shrugs off like a very heavy jacket. It goes right down the marrow, and requires phenomenal effort to survive (and - if lucky - recover from). And as you say, without extraordinary effort, it would wreak havoc even more than it already does.
Thank you for taking the time to comment / share your thoughts. :)