Ptsd, Being Too Functional, Or Not Functional Enough

[EmmaOwl]

I originally composed this message as a response on a thread called "What I Really Want To Ask My Therapist", on the Therapy discussion board. I realized I was going way off topic and there was a side discussion that took me in a very different direction. I think it's something a lot of people worry about, how do they appear vs. how do they feel. I see a really big difference, with not many people seeming to feel "medium" - meaning, I haven't encountered many people who think their outside appearance and behavior accurately reflects how they feel inside.

That is something I've observed informally - please, correct me if you think otherwise! I'm very interested on this one, where people with PTSD might fall between these two things, too functional, or not functional enough.

So, with thanks to Scandinavgirl

for creating the original thread, thanks to Suzetig whose post sent me off in this direction, and thanks to everyone who contributed on the original thread, here I go:

I too worry that I'm too functional, have avoided lots of minefields and generally keep myself looking pretty "normal".

I understand this worry and - I've spent years feeling that way, especially through high school and college.

However, on down the line, one of the most difficult things for me to accept was to declare myself "totally and permanently disabled" in order to receive disability benefits. I was 25.

So, I have had people say things like, "Well maybe not forever. Maybe in 20 years, maybe you will be better then." That's not, you know, really an encouraging thought (to me). You sign paper after paper, see doctor after doctor, you are at your lowest point and you have to accept that you probably won't improve very much. I don't expect I'll ever be able to live on my own again and when I think about that, it feels like I've been punched in the gut.

Just throwing my two cents' in. Everyone is different, but there are times I wish I felt that way again, I wish I could worry about being too functional.

NOT taking anyway from anyone's experience here - if I didn't have a massive second trauma, I expect I would have at least stayed in a similar place of appearing too functional. Probably improved if I'd found good therapy for myself. If I had not lived through this "totally and permanently" thing, I would not understand it either - which is why I'm mentioning this. I find it humiliating, discouraging, and as though I'm a failure as a human being.

I do not envy anyone on the other side, though. I know what it's like to feel ripped apart inside, and have no one know, no one to acknowledge it, and finally those mentioned on the thread started by @Scandinavgirl

- when some people know, but no one gets it.

I would like to encourage anyone reading this, though! While I was busy worrying about being too functional - well, I did a lot of good things! I'm glad I did them. Fun things, difficult things in school and relationships and life in general, things that aren't anywhere near my reach anymore. I know that "too functional" is a rough thing to handle, too, and I worried that I'd be living on that particular plateau forever.

Now, this is not a precautionary tale! In my experience, the trend is to get better with treatment, not worse. Come to think of it, I'm not sure I know anyone who has developed PTSD and then gotten worse. If I had not experienced a second severe trauma, I expect I would be in similar shoes - managing but feeling pretty awful.
I didn't just go and dive down from the point where I was able to complete college, get into grad school, etc. I didn't go randomly. Had it not been for the second trauma, I believe I'd be at approximately the same point as everyone here who has this particular issue - and it would probably feel like the worst way to live. It was terrible, I was miserable... but I was ABLE. There's something about displaying competence, and reaching accomplishments that is very important to me, that I miss.

I am so so sorry for anyone living through this, though. I often had breakdowns when I was under pressure, like when a college paper was due, for a very general example. I know it sucks. I know it's almost impossible to explain to others, and it is a terrible way to go through life, when to feel that you appear more functional than you really are.

So here I am and I'm unfortunately familiar with both sides. Dealing with Trauma 1 - felt that I appeared much more functional than I really felt. But then, add in Trauma number 2, where I'm a wreck and a disaster and beat up, can't do anything else. Can't appear functional even if I tried.

Just... I don't know, keep trying? I've seen people get better with treatment, either self-improvement, sometimes books or groups or on boards like this, or with professional help, or both. I haven't seen anyone get worse, at least not without adding in another significant trauma. I hope that is at least a small comfort. ?
Thanks for reading my thoughts on this. I'm wrestling an awful lot right now.

 

[Eagle3]

I'm going through this right now. Even my therapist has mentioned the fact that I hide my functional difficulties SOOOO WELL! I'm actually scared because I'm filling out disability paperwork for SSI and my dad has to fill out a "funtion report" about me. I know this man is oblivious and to him I appear almost totally functional, just lazy. His report could get me denied, even though I CAN'T function right now! I can barely get out of the house! Everyone sees the functional me that I display without thought in public, but they don't see the DAYS I spend in the house, not showering, dogs barely getting fed, nothing getting cleaned. The sleeplessness, the physical pain, the anxiety and restlessness, etc. I'm exhausted from trying to fake it, so I'm not faking quite so much anymore. And that's a scary thing to do as well...

 

[CDKLaw]

This is a problem I have with my wife. Because she, for some reason, has refused to do any reading about my CPTSD, she behaves as if she thinks I am just work shy. Even if she sees how distressed i am, she refuses to acknowledge it. She sees somebody that tries to stay calm, does the housework, cooks, has successful auditions and has been in therapy improving for 4 years. She does not get that, although my behaviour has improved, internally I am becoming worse-more afraid, more desperate.

 

[Kolten]

This is an awesome post actually. I myself am also going thru filing for SSD because I want to be able to be an active member in supporting my household. In a quick nutshell my life took a complete 180 after diagnosis of PTSD. My wife and I had to move closer to my family so they could help as I was not functional or not well and she couldn't do it alone. This disrupted our lives tremendously but thankful for the family support. We lost everything materialistically. We filed bankruptcy. We literally were having to find a way in the newer stages of PTSD to start over. That was almost impossible I felt at the time. I was not functioning even what i would call well until about 5 months ago and we are into this for going on 2 yrs. I had a huge problem in my mind at first filing for SSD because I felt I wasn't the disabled one. I wasn't going to be "permanently" disabled. This will go away. And months kept going and improvements would come sure but not enough to work a full time obligated job. My wife saw it. I didn't. I feel on the outside I "look" 100% functionally normal. Fit right in to societies norm. But what goes on when PTSD strikes and the toll it takes on my mental emotional and physical being are so not functional. Sometimes for a few days to recover. All that said my wife has worked full time thru All of this. She is an amazing woman. She also developed vicarious PTSD from mine and still functions at high levels. I used to be the one who worked the six figure job to take care of my family down to having to rely on my wife working while I am at home. Its taken a yr for me to cope with that. So that's where filing for SSD came in. I avoided it for almost 1.5yrs post diagnosis and decided it was time I faced my "functionality". I want to provide for my family as a husband and father and of that is how I must do it then I need to drop my pride and move forward.

I know how it feels to have ppl think from the outside you are just lazy or lost your work ethics. They have no idea what goes on the inside daily for you to fight this disease though. And I wouldnt wish it on anyone to find out. You have to come to terms being disabled doesn't mean a physical issue that's apparent to the eye. Rather one that is stored deep inside of you that the naked eye can't see. And THATS OK! Functionality is up to the beholder. We all do the best we can each day and as long as you keep fighting and moving forward then that's all anyone can ask. It still does bother me time to time to be "disabled" but walk and talk like everyone else.

 

[Friday]

I don't know where I fall on the continuum. Although I do know I tend to move around on it, an awful lot. I think I'm lucky, though, because it doesn't really matter (to me) ; because I don't need anyone else's approval. Very, very lucky. Once people start needing approval of others, for disability, treatment, jobs, relationships, etc.? I think it makes things a lot harder for people. ((Comparing it to having been a much better parent before I had to prove I was a good parent. It's a game changer; doing the right thing, versus the appearance of doing the right thing. SMH.)) All I have to focus on is how to get more functional, in the ways that I want to. Not proving the level of functionality I'm at, nor following anyone else's preconceived notions of what that looks like.

When I'm doing badly? I tend to be doing very badly.
When I'm doing well? I tend to be doing very well.

The distance between those 2 things? Can be moments or years. I've switched from non-functional to highly functional in a day (instant all better! Just add crisis! Okay. Not really. But it was the launch mechanism I needed, and from there I happened to catch a toehold), and similarly have spiraled out of control again (lost my toe hold) in a matter of weeks. And I've also been non-functional for years, and highly functional for years.

To actually be consistently doing well or doing badly? Those periods of years? Each depends -I am coming to believe- on a series of other things going on in my life that are either supporting me, or cutting me off at the knees. Aaaaaaand they don't always exactly make sense. It is exponentially more difficult for me to get my head straight when I have an abundance of "normal" in my life, for example. Also less likely to kill me, than the wild, but so so so much more difficult to move from one level of functionality to the next. Catch22. In order to have normal in my life? I need about 12,000 different areas of support in place to maintain that. Normal and I don't get on, well. It's not a natural arrangement. Normal steals my blankets and hogs the bed. Kick in some wild, however? All of a sudden I'm functioning much better, and can -if I time it right- manage to start adding normal in, in places, without setting myself up for an immediate return to completely non-functional, again.

The first time PTSD hit me, I went pretty feral. I thought I'd overcome that, but right now, I think not. I think I'm badly domesticated, at best. There's reasons I want to be here, but I think I'm always going to be a wild thing. With special handling required.

***
Thank you for this. @Allie D. This moves several pieces I've been struggling with into place for me.

 

[Scandinavgirl]

I originally composed this message as a response on a thread called "[URL='Link Removed...

Hi. I am glad my thread could inspire you.
I must idmit, that the reason I dont post much in here, is because I am high functional, and I dont even got a diagnosis. I am in therapy because of childhood trauma though, so I can relate to alot of the symptoms of complex ptsd (which does not even exists ive heard).

But still: My pain is invisble to most people, and I have also repressed it myself for a Long time. I am quite good at seeming fine, when I am not. I know this now. Fortunately, I think my therapist understands that. But not my husband, friends etc...

I hope you find some ways you can experience some successes and feeling of value for those around you despite you are not working. There are alot of things u can do when you have the energy.

 

[Lee2001]

Seriously thank you for this post! So relatable and wow this is what I feel like! I am considered high functioning and put on such a good front... even to my therapist I believe. I have been so good at hiding how i really feel my entire life. I have been feeling so overwhelmed lately and struggling. Even when I tell Therapist I can tell he thinks I am doing just fine. He always brings up how I am a nurse, have a family, etc. I am not working at moment but would be scared to go back when like this. Just makes me think I should just step away from therapy if all I do is dredge things up, feel awful, and then expected to be high functioning. Just frustrated but so glad to see others on both sides of spectrum and their experiences. Thank goodness for this forum! You all get it!

 

[Lola Nocheprieta]

I, too, have been on both sides of the coin: grew up feeling like a smart failure (called lazy, underachiever, so smart but so flaky, what a waste of potential, etc), then found my way as a young adult with work and college (3rd try!), then a few years of success, highly functional (very successful in college, career, & law school of all things), feeling happy, doing well and feeling competent, knowing how to live with PTSD (from childhood physical and sexual abuse) & depression (undiagnosed at the time.) Those were my 20s.

Then a serious MVA (hit by a drunk driver my last year of law school) and I went down in flames due to chronic pain, severe depressive episode (which led to dx) & resurgence of PTSD symptoms (sx): vomiting every day, scary suicidal ideation, crying & rocking in a corner, dissociation & FBs & general hopelessness. It's amazing I passed the Bar exam. Ultimately I lost my job after law school and went on state disability (only 1 year allowed.) I never applied for SSI/SSDI (my psychiatrist said it would be nearly impossible for me to qualify), but I was still unable to work or function around the house for another few years. The only thing I did well was help to raise my partner's (now wife) little sister who was a preteen when she came to live with us full time. My wife and I almost separated a couple of times during those difficult years (my 30s.) It took about 7+ years, a couple of career changes, and a 4th diagnosis (dx ADHD) for me to get "back on my feet" again.

Then I had a dozen years of great success (more or less), personally and professionally. Of course, PTSD symptoms are always there, but they were relatively mild and didnt interfere so much, and the depression was well-managed with meds. Getting the ADHD dx was key for me to figure out how to manage my life and everyday tasks, even though I don't really know which came "first," the PTSD or the ADHD. I suspect the neuro-cognitive-developmental havoc that severe early abuse wreaks on a child influenced the development and severity of the ADHD (inattentive type.) The daydreaminess and spaceiness of ADHD is very similar to the dissociation of PTSD, at least how I experience them. That's a whole separate post!

About a year ago I crashed again for no apparent reason. I'm in so much pain, the depression is back big time, and the PTSD sx have come roaring back with a f*cking vengeance. But I still have my job. I know how to "fake good" and rise to the occasion, hide my shit and make sure my lost time at work doesn't impact anyone else. I'm very, very, very fortunate. I'm head of my department, I have a small but fantastic team, supportive bosses (one knows what's going on and the other just knows I'm "undergoing treatment for a health condition.") I also work in disability rights, so I don't think anyone will f*ck with me! If I have to ask for a formal accommodation I will in a heartbeat to have the protection of the Americans with Disabilities Act (ADA.) I don't think I'd be posting this much personal information if I didn't work in disability rights.

This "apparent competency" and "faking good" when in anyone's presence masks tremendous pain. My wife & T are the only people in my life who know about the sleep comas I indulge in over the weekend (and sadly, I've been calling in "sick" more frequently, so some of these sleep/depression comas happen during the work week, too.)

The thing is, I am genuinely competent and high functioning, and I use the term "faking good" very tongue in cheek. I don't really feel like I'm faking so much as calling up that authentic 10% that is confident and capable, able to relate to others, be warm & compassionte at work and with friends and family. It's real, but it's a sliver of who I am right now and it takes all my energy to dredge that part up. I'm more stabilized now, but for more than half a year I cried every day walking to work, and I still occasionally cry silently in the bathroom between meetings, and have flashbacks and lose time at work (I have a private office, thank god.)

Being high functioning is exhausting and lonely. Although I currently feel like I'm walking the razor's edge of highly functional/non-functional, I'm glad I still have a job I love, I know I'm good at, and I'm well-respected. I just know how quickly it can all go to shit. I empathize with you all, at whichever end of the spectrum you currently fall on.

 

[Justmehere]

However, on down the line, one of the most difficult things for me to accept was to declare myself "totally and permanently disabled" in order to receive disability benefits. I was 25.

I myself am also going thru filing for SSD because I want to be able to be an active member in supporting my household.

I want to challenge the thinking of what a SSA disability status means and doesn't mean.
This is directly from the SSA website at Disability Planner: What We Mean By Disability
"Disability" under Social Security is based on your inability to work."
- note, this doesn't mean inability contribute to the running of a household or inability to contribute to society or inability be a worthwhile human being with a life worth living.

"We consider you disabled under Social Security rules if:

• You cannot do work that you did before;
• We decide that you cannot adjust to other work because of your medical condition(s); and
• Your disability has lasted or is expected to last for at least one year or to result in death."

I too balked at applying for disability. I was an honors college student when suddenly PTSD ran away with me. I had worked several great jobs and was advancing in my career. Now, after a number of years of being on disability, I am working my way off. I'm not sure I can do it. In many settings I look just fine. No one has any idea. But then in a handful of other settings it's impossible to miss. I run into the challenges I faced as a smart but learning disabled kid - just magnified. Everyone (except for the clinical folks) think that well, if I can perform well in that setting, I should be able to do everything, and I just need to try harder. If only that worked...

In the time that I have been on disability, I have done a lot of things through volunteer work... I was even sponsored to volunteer abroad to build a school in a developing country.... and I also spent periods of time struggling to manage buying groceries down the street.

The thing is, I couldn't sustain work. I tried, and eventually my symptoms would sink me. For me, I eventually had to come to terms with that I needed the space and security that disability provided so that I could invest in treatment and find some relief, and hopefully have a better chance to sustain work down the road, and that even if I never did work again, I could still contribute to society...

There are still times now where the only way I do anything of value seems to be to get out of bed and feed my dog, but I keep trying and I keep trying to remember my worth is more than my ability to sustain a job.

I'm also just scared. I want to do more. So much. I'm scared I can't. That I'll never get there. When my symptoms are low people say I can do stuff well, but that's so unexpected and intermittent. I'm still trying, disability status and all.

 

[Kolten]

I want to challenge the thinking of what a SSA disability status means and doesn't mean.
This is dir...

I hope what I said in my post didnt come across wrong. I was not insinuating that I was not a contributor to supporting my household without it. I mean with it I will have the opportunity to additionally support the financial means of my home which takes a little stress off of my wife and makes me feel more self worth as well knowing I can do that for her. I'm not proud of it. I wouldnt go shouting I have it to anyone that's for sure. I'm a 33yr old guy who most normally would be working and holding down a good job for me and my family. I waited 1.5yrs past diagnosis to even make it to the point of filing to attempt to get it because I was scared and felt it wasn't "bad enuf". I think that until an episode puts me down for days and realize why right now working is not an option and feel better about my choice. As for you making that move a while ago to get SSD that is something to be proud of. It takes ALOT of guys and courage to make that choice. So commend yourself there. Don't worry about never being able to work again as I am sure as long as u are seeking active treatment and also focussing on YOU and what you can do to improve YOU then u have a great chance at it. Your mind is a powerful thing. Take one day at a time. Be in the present moment and don't worry about the future of working. Be ok with where u are now and you wouldn't have been awarded SSD if it wasn't deserved for u. Ur story is inspiring just know that.

 

[Rumors]

I always function. There has never been a time where I didnt function. I am thankful for that bc I believe it has kept me from imploding. I can't comprehend being on SSD not to say that I think it is wrong...it is just not right for me. I have had some pretty significant health issues but have managed to continue to function maybe not at full speed, but I got out of bed everyday. Being busy is what can make things tolerable sometimes. I don't know what I would be without being able to stay functional at work...

 

[Cannottakethis]

This is a fantastic thread. I've spent years trying to appear not just functional but trying to be the best (perfectionist) at work.... usually going between 4-6 years between breakdown/hospitalizations etc. nobody I worked with would ever have guessed how I spent my weekends alone and isolated in my apartment.

Almost 5 years ago after my 2nd domestic violence relationship ended, I met my husband. First person that didn't objectify me. Through our time together I have had some rough patches, and we came to the conclusion that I should apply for SSD. This was after a close to 20 years of a successful career, finally finding the job I loved, but truly unable and incapable of making it work. @Allie D. and @Justmehere it felt so foreign to give up working. It's been over 2 years and I'm just starting to accept it.
And I still feel functional in certain situations as long as there aren't crowds, traffic, loud noises or too much time away from home.
But different things have different meanings now. If I clean the kitchen, that's a good day. If I work out, good day. KWIM?
And I'll ask my husband, do I seem sick? Would you think someone with my problems and trauma is really sick, like maybe I could handle it, and he's very sweet when he tells me, no, you're doing the right things.

As an FYI I grew up in a family where problems were ignored and we were presented as the perfect family. I spent a lot of time doing that before everything started hitting me.