Struggles In Getting People To Understand My Ptsd

[MrIdentical]

Hi all,

I'm new here, I've never posted before so I'll introduce myself.

My name is Josh, I'm 26 and I'm from North Queensland in Australia.

I developed PTSD sometime between 2007 and 2008, I also have Bipolar Disorder, OCD, Complex PTSD and have in the past suffered a major Psychosis.

I was diagnosed in 2008 in a small country town in New South Wales with a huge waiting list, and as such they didn't have room for me. I stupidly took this denial to mean that I mustn't need treatment, and oh how wrong I was :P

By 2009 I started having regular panic attacks, usually I would hyperventilate, pass out and when I came to I would be fine and could keep going. By this time I'd become rather paranoid and was resistant to the idea of any form of treatment.

In 2010 I became engaged and moved in with my then fiancée. We were happy together for a while, but once she saw the "inside me" ie; all the bits of me I had been hiding from the public, she became quite distressed and didn't stop being distressed.

Suffice to say she didn't understand my PTSD and I couldn't make her understand. Her family didn't understand either, and by 2011 they were becoming openly antagonistic towards me. A few of them tried to understand, namely her little brother who quite profoundly related his Diabetes to my PTSD, but in the end they were all against me.

A few problems had occurred in the interim. One example is that while her sister in law was in labour they asked me to baby-sit her kid brother. We were living in shared accommodation at the time and they wanted him to come into my room and play the X-Box while I slept.

My room is a no-no for me, at least since developing PTSD. Nobody goes in there, and if they want to, say to do repairs or maintenance or something, I need days of warning just so I can prepare myself. It's difficult to explain.

Any way, I said no, and greatly upset the little brother and his mother, which was another nail in the coffin.

Another nail in the coffin for me was that since around 2010 I was unable to work, I'm still unable to work, because of my extremely high anxiety. Doing anything remotely stressful starts pumping up my anxiety, and when it's high enough I have an episode, which is a period where I just can't do anything because of my anxiety and panic attacks.

In 2011 all hell broke loose, I was having extreme panic attacks, waking up at 3-5am in the morning and vomiting as if I were extremely ill. Then I'd sit on the couch and shiver until around 9-10am. It was extremely difficult for me to cope with, especially since my fiancée didn't understand what was happening and would try to argue with me, which made things unbelievably worse.

Only then did I seek treatment, I was medicated by my GP with Fluvoxamine but it was too little too late, so I had myself hospitalised.

I was in hospital for six weeks, leaving briefly for Christmas, and while I was in there my relationship ended, so I decided to move home to North Queensland.

Since then I've been living back with my folks in North Queensland. Because of my inability to work I have been trying to get a pension, as much of a dent in my ego as that may be. I've been turned down around six times because the people screening me decided I hadn't "finished" my treatment yet, hopefully after six visits to a Psychologist I can go ahead with that and move out.

I apologise for the life story but it's a bit necessary in regards to my question.

I have a hell of a time getting people to understand my PTSD. The worst case is my father, who hasn't attended any of my Psychiatrist appointments and who has this ridiculous idea that I should be "better" by now.

While I go through a lot not much of it is visible, the people around me seem to expect me to be rolling around on the floor in agony. What they don't understand is that, especially after living in a poisonous environment with my ex and her family constantly judging me and calling me crazy, I've become extremely, EXTREMELY good at hiding my panic attacks.

And I can't stop it, now when I am suffering anxiety or panic, I tell people, and my immediate family think I must be making up because what I'm suffering is now totally invisible.

On top of this, I get pressured into "doing something" about my problems, like they were normal grief and stress. My experience with PTSD has been like sleeping on jagged rocks. I try to get as comfortable as I can with the problems that I suffer, but then some hero comes in and tries to manhandle me into "wellness", and before I know it I'm sleeping on even sharper rocks.

What I mean by this is that my symptoms have been steadily worsening. In 2011 when I began to have major morning panic attacks my symptoms permanently worsened and have not alleviated, even though I am on some very strong meds now and have been getting therapy for two years.

This has happened at least once that I can tell since then.

I now experience episodes several times a year, three to four I think. These last between a week and three months. It's kind of like walking through reeds. As the reeds get thicker your way forwards becomes harder and harder, until you just can't move any more. In my case, I have to take time out until the reeds clear, usually this means hiding in a book until it goes away. There is simply no other way to handle it. I begin having general panic attacks at any time of the day. I've been told all these wonderful ways to persevere and none of them work, at least none that involve not stopping what I'm doing in life.

I'm there right now - having an episode.

I felt it coming on around early September when I was getting panic attacks at night as I was going to sleep and during the day, sometimes while I was doing things (I've been volunteering, quite heavily last year as I couldn't work. The increased activity appears to have impacted me again).

However at the behest of those around me I "persevered" and kept going, trying to "get through it" which is another phrase non-sufferers seem to enjoy using. What I've discovered is that it just puts off the inevitable and now the episode that I have to endure is worse than it could have been had I just taken time out.

I'm really tired of people trying to fix me, but I'm even more tired of constantly having to argue with people about what I'm going through. Some people want to tell me what I'm experiencing, or tell me how to fix it, even those who know remarkably little about PTSD.

So what do you guys think I should do? I'm doing my head in over all this. I just can't seem to find a place for myself in the world because I cannot fulfil the criteria people place on me, and when I say I just want to take it easy they start comparing my physical problems to theirs and "deducing" that they are more stressed than I.

I've tried over and over and over and over and over and over again to try to explain these things to the people around me but they either refuse to understand or they simply can't, I'm not sure which one it is.

I'm not being listened to, at least not without being analysed by the people I'm trying to explain myself to. "I'm having an episode" invariably leads to "Maybe you should get out more?" or "Yeah, it's because you're doing/not doing this this and this!" instead of "I hear that you are having an episode and need time out."

Because of this, I'm becoming snippy with people, which is making things worse.

I also don't have any friends, not outside my family and my church. I discuss very little of this with my church friends because there's always somebody who wants to tell me that Jesus can heal me.

So again, any advice would be phenomenal. I'm honestly on the verge of I don't know what, just walking out the door and never coming back or something.

And again, sorry for the life story, it's not a simple problem.

 

[macca]

Welcome @MrIdentical - hopefully here you will get some of the support you so desperately need, and deserve. This forum is awesome, I registered a few months ago, and it has been amazingly helpful ever since. Love your avatar by the way - Tom Baker is the best Dr Who in my opinion!

You'll find many of us here have struggled with others not understanding, but I'm just blown away by the sheer amount of non-understanding and stupid attitudes you've had to deal with, even from well-meaning people. I could easily go on a rant here but I'll refrain! There are a few threads here and there on this, but here's one I found for you that might help you feel less alone in your frustration:

https://www.myptsd.com/threads/ptsd-still-widely-misunderstood-by-people.38261/

What I'm thinking is - maybe you need to really set boundaries on even the well-meaning ones - just take the time when you need it, for however long you need to. Easier said than done, and I'm hoping others on here can give you some more practical advice on how to do it. But maybe, just express your need to be alone and then go. Don't answer the phone. Just message them you're ok and you're having some down-time, and you'll contact them when you're feeling able.

You know - it just occurred to me - a lot of them sound like they are mixing up your severe anxiety with depression - they hear that it's good to get depressed people "up and doing things" and they might think that this method must be "good for everything" in the mental distress line. Or they can't get their head around PTSD being quite different to what they think.

Anyway - you'll find lots of understanding and support here.

 

[Pencil]

I have no advice. Although our circumstances are worlds apart, I find the same lack of understanding, and especially lack of willingness to try or want to understand. I often find people reacting as if PTSD were a character flaw or a moral issue. So, I look forward to responses ...

 

[ill]

Personally, I would set really firm boundaries. When I was calm and clear, I would try to talk to my family and anyone else I thought I needed to talk to, about exactly how and why their behaviour is detrimental - something like "I understand that my illness is invisible to you, but it wreaks havoc on my life. My symptoms are real and they are painful and scary. I understand that your advice is meant to help, but I do not experience it as helpful. In fact, I often find it harmful and hurtful. When I tell you I am in the midst of a panic attack or episode, I would like you to offer support and understanding ('I hear that you are having an episode and need time out') but not to tell me what I need to do to make it better. My mental health issues are serious, diagnosed health issues and the only people fit to "treat" me are mental health professionals. I love you and I would appreciate your support, understanding and respect as I learn to manage my health conditions and symptoms."

Taking time out when you are overstimulated/overstressed *is* persevering and going through it. You need that time to rest and recover. Doing more when you're already at your limit is a recipe for disaster - I used to try to push through and keep going, and holy shit, the consequences. You know those consequences and the fact that it can take even longer to recover when you try to push through - you become exhausted, your ability to manage your symptoms is worse, it's just a terrible place to be in. They don't know that the way you do, and they may never know that, but that's okay - as long as they respect that and your boundaries. And more than anything, you need to respect your own boundaries, whatever they are - what you need is what you need, the end. If you need time, take it. If you need quiet and you're surrounded by noise, leave. Your well-being is the most important thing, so do whatever you need to do to ensure it.

I hope you receive that pension - being able to have your own space to heal can help enormously.