Facing the Challenges of A Complex PTSD Diagnosis

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This weeks’ Friday Guest Blogger is Charlotte Em who writes candidly on her experience with Complex PTSD and Trauma. She brings insight and a raw experience to the condition not often seen. Most of all she offers hope and a light at the end of the tunnel. A good article to end what i hope has been a good week for you all.

If anyone asks about my mental health, I tend to tell them that I suffer from depression and anxiety. That does a pretty good job at describing a lot of my symptoms. I’d come to accept that’s just what I had. I’ve looked into other diagnoses, such as Borderline Personality Disorder (BPD), and been told “you can’t possibly have a personality disorder, you’re not [insert word for visibly crazy] enough.” But I still had a gut feeling—and have for a long time—that depression and anxiety don’t quite explain everything that’s going on with me.

A few months ago I visited my GP in one of my throes of despair and confusion about what is going on in my head, and I tried to communicate how much I was struggling. In the very little time he had with me, he said it sounded like I could have an unstable personality disorder and referred me for an assessment. I have long-suspected that that is the case, but the idea terrified me. Any disorder with “borderline”, “unstable”, “emotional” or “attachment” in its name sounded terrifying. I couldn’t help but feel that if I had one of those disorders, I was an inherently bad and irredeemably broken person. BPD (also known as Emotionally Unstable Personality Disorder) is an incredibly stigmatised label. Its sufferers are often presented as erratic, high-maintenance, difficult, manipulative, attention-seeking, and drama-addicted. The archetypal “crazy” person presentation in popular culture tends to centre around the symptoms of BPD and, specifically, on the low-functioning end of the spectrum: sufferers are outwardly volatile and unable to control themselves. You can see why I didn’t want to be tarred with that brush.

This week I finally had my assessment with mental health specialists: a mental health nurse, and a psychologist specialising in personality disorders. It was, to my surprise, an incredibly positive experience. I have had very few positive experiences of the mental health system within the NHS, which made it extra special. The two assessors were so warm and friendly and very, very good at explaining things. I felt like they just got me, which I wasn’t expecting, because I never feel like I get myself. Ultimately, I present with complex/ developmental trauma (C-PTSD).

The best description I’ve found for this is as follows:

Complex post-traumatic stress disorder (C-PTSD; also known as complex trauma disorder) is a psychological disorder exhibiting features similar to borderline personality disorder (BPD) and post traumatic stress disorder (PTSD), thought to occur as a result of repetitive, prolonged trauma involving harm or abandonment by a caregiver or other interpersonal relationships with an uneven power dynamic… Some researchers argue that C-PTSD is distinct from, but similar to PTSD, somatization disorder, dissociative identity disorder, and borderline personality disorder,[4] with the main distinction being that it distorts a person’s core identity, especially when prolonged trauma occurs during childhood development. There is a strong overlap with BPD. It’s possible—indeed, likely—that many people with BPD have experienced trauma. It’s also likely that people with complex/ developmental trauma exhibit many of the same symptoms as people with BPD—for instance, fear of abandonment, attachment issues, dissociation, and a confused sense of self. However, they are not the same thing.

I’m not sure what the educated consensus is regarding C-PTSD and whether or not it’s a personality disorder. Not that it really matters, but it’s an interesting question.

Below is the definition of personality disorders as given by the NHS: (The NHS is the National Health Service in Great Britain).

Personality disorders are conditions in which an individual differs significantly from an average person, in terms of how they think, perceive, feel or relate to others.

I would argue that this is an accurate description of C-PTSD sufferers, and that it is therefore a personality disorder in and of itself (although I may be wrong).

None of this means I’m irredeemably broken or that I have a horrible personality. It means that I had some less-than-ideal experiences during a crucial phase in my development which influenced how I view the world and react to situations. None of this is my fault, and it doesn’t make me a bad person. It just is. My needs weren’t met, and so I didn’t develop many of the necessary skills to cope efficiently as an adult. Maybe I’ll never be what I consider to be “normal,” but that doesn’t mean I shouldn’t try to live as healthy a life as possible in spite of my past. The idea that C-PTSD and personality disorder sufferers are so heavily stigmatised makes me really sad. We didn’t ask to be this way; we’re simply doing the best with the resources we have been given.

How C-PTSD Affects Me Personally

In terms of how C-PTSD affects me, it is multi-faceted and seemingly never-ending. Hence the “complex” part, I guess! Also, I should say, I don’t think everyone is affected in the same way. But these are some of the common symptoms and things that affect me (this is only scratching the surface):

Unstable and fragmented sense of self/ identity.

I’m sure there are a lot of people who would say that they don’t know who they are, but with me this is kind of an extreme. I feel like I change around everyone. I unconsciously try and be the person I think is most appropriate for whoever I’m with. I’ve never formed a strong sense of self.

As much as I enjoy spending time with people, I find socialising exhausting because I’m so hyper-aware of how I’m coming across—not in a vain way, but in that I can’t separate myself from my self-awareness. Often I dissociate (another indicator of C-PTSD) and stop being mentally present in the moment. It’s like I’m floating above my body and I don’t know how to come back. I feel like there are loads of different parts to myself that don’t fit together. I’m always contradicting myself, disagreeing with myself and changing my views on things. I like to think I’m open-minded, but sometimes it feels like I’m so open-minded my brain’s going to fall out. As children our formative years are supposed to be when we figure out who we are. But what if there are other things going on that mean you don’t get the chance?

Memory loss.

I struggle so, so much with my memory and it’s infuriating. This Wiki article is very interesting, and the most relevant part for me is this:

Psychological trauma has great effects on physical aspects of patients’ brains, to the point that it can have detrimental effects akin to actual physical brain damage. The hippocampus, as mentioned above, is involved in the transference of short-term memories to long-term memories and it is especially sensitive to stress. Stress causes glucocorticoids (GCs), adrenal hormones, to be secreted and sustained exposure to these hormones can cause neural degeneration.

Sometimes I literally feel like I have some kind of dementia. I can’t remember the most basic things. It’s incredibly distressing and often embarrassing. I can vouch for the fact that its effects can be akin to actual physical brain damage, because my partner has actual physical brain damage, and our memory is just as bad as each other’s!

Brain fog.

Oh, my brain fog. This is very much linked to the poor memory, too. I forget where I am, what I’ve done earlier in the day, who I’ve had certain conversations with (I remember the conversation but not who it was with, which is always unsettling), people’s names, what I was supposed to be doing (especially at work, which makes me look really unprofessional/ like I don’t care). I trail off in the middle of a sentence because I can’t find the words I’m looking for, or I can’t remember what I was talking about. For instance, I have to answer the phone at work, and the caller will tell me who they are, where they’re from, who they want to speak to and what it’s regarding. I’ll put them on hold to get the attention of the person they want to speak to, and then forget who it is on the phone and where they’re from. Or I’ll forget who they want to speak to. I try and remember to write this information down so I don’t forget, but ironically I often forget to write it down in the first place. This kind of thing happens all day, every day.

Impaired capacity to describe emotions or bodily states/ difficulty mentalizing.

I frequently feel what I like to describe as “ungood”, but I don’t know why. I might know something isn’t quite right but often others notice before I do. I don’t know what’s wrong, and I don’t know how to fix it. I don’t even know how I feel, I just know it’s not good. It’s very rare that I am able to pinpoint what I’m feeling and why I’m feeling it. This can leave me feeling lost and confused and out of control.

Mentalizing is the process by which we make sense of each other and ourselves, implicitly and explicitly, in terms of subjective states and mental processes. It is a profoundly social construct in the sense that we are attentive to the mental states of those we are with, physically or psychologically.

Keeping track of our own emotions can be really, really hard. So can describing them. I hardly ever know when I’m about to get sucked into a depressive void and I find it really hard to see it coming or know why it’s happening. This means I can’t prevent it by reasoning through it.

Lack of capacity for self-care.

One thing the psychologist I saw this week explained to me is that some areas of my brain are over-active or over-developed—my ‘drive’ and desire to be ‘doing’ things, and my flight/ fight response. In contrast, the self-care area is incredibly under-developed. In case you’re a visual learner like me, I reproduced a diagram the psychologist drew for me (note: these do not correspond to actual areas of the brain and it is obviously incredibly simplified!):

Note how nothing is the right amount of developed. Sigh. It’s no real wonder I never feel mentally balanced and I am susceptible to emotional dysregulation. I never really learned how to care for myself or how to put my needs first. At the moment, while I’m trying to cope with a full-time job, my life is split between going to work and fuelling myself with coffee while I’m there (not helping the over-active fight/ flight part of my brain, but I need the caffeine to stay awake), coming home and sleeping, or obsessively creating things to keep my mind busy and to try and become better at creative stuff because I never feel I’m good enough. I never actually ‘relax’. I don’t know how. Every time I try I get bored, and feel unproductive and guilty. I find it really hard to make time to do things for me that involve self-care—reading a fiction book, exercising, having a soothing bath, painting my nails, cooking a nutritious meal for myself, even just doing something that’s not related to my general career/ life goals. I feel like self-care is “wasting time” even though I consciously know it’s entirely necessary and deserved. Unconsciously, I imagine I feel that I don’t deserve it and that there’s no time because I’ve got other things that I need to do.

Dissociation.

I zone out of my brain and body. I don’t know where I go, but I’m not mentally present. I feel like I’m watching everything and interacting with people through a window. Dissociation is something the brain can do to cope with trauma—it’s basically the mental equivalent of the ‘flight’ response. Sleep is also a method of dissociating for me—my body has learned to use it as a coping tool because I get to be unconscious and unaware. I feel really trapped if I’m in a situation where I can’t go home to sleep if I need to. This causes me anxiety about going anywhere.

Preoccupation with threat, or impaired capacity to perceive threat, including misreading of safety and danger cues.

I have severe anxiety about driving because I am convinced I’m going to kill someone if I do. My partner has tried to tell me that I’m a safe driver. That may be the case, but I’m convinced I’m going to have a lapse of concentration and do something awful by accident. And if I did have an accident, what would I do? I’m not sure I would know what to actually do. Who would I call? What details would I give to the other person involved? How would I get home? I need to know I can get home. And I haven’t read the highway code recently, and I fully believe everyone who drives should know the highway code. But I know that if I try and read it I won’t remember much of it because my memory sucks, and that’s not good enough. Therefore I don’t feel responsible or mentally aware enough to drive. That’s just one example of the kind of thought process I go through. When you’ve spent the majority of your life in fight or flight mode, you are hyper-aware of everything. It is exhausting.

Maladaptive attempts at self-soothing (e.g. rocking).

Yep, I literally rock sometimes. Back and forth. Like a stereotypical mental asylum kid. I also pick and pull at my skin, bite my nails, chew my lip, chew my hair, jig my leg, and fidget. Sleep is also a go-to self-soothing tool for me.

Habitual (intentional or automatic) or reactive self-harm.

I used to self-harm to cope with my feelings. I rarely do now, but I still get the urge. It was a way of putting painful feelings that I didn’t understand on the outside of myself. It was like the external validation I’m always craving, this time in terms of my pain: yes, I feel bad, and I’m not imagining this.

Inability to initiate or sustain goal-directed behaviour.

It’s rare for me to finish things I start. My goals are always changing and I never know what I want. You know how kids change their mind about what they want to be when they grow up on a daily basis? I do too. This applies to every goal, big and small.

Avoidance of responsibility.

I can’t deal with it. It makes me tired. Exhausted, even. At work it’s especially difficult. Sometimes I’ll be asked to do something and I won’t know how to do it and I’ll become unbearably tired and feel desperate to go home and sleep to get away from it. It’s not laziness, it’s fear. Not necessarily fear that I’ll fail, but I just become mentally overloaded and don’t have the brain capacity to think through what it is I need to do and it feels like too much and I need to escape the situation.

Push/ pull dynamic in social relationships.

Cling, withdraw, repeat. I need everyone, then no-one. I could write so much more on this but I’m not particularly conscious of when and how I do this, I just know that it happens. When I’m clingy I get frustrated that I’m never going to feel “close” enough to my partner. I follow him around like I’m waiting to be fixed even though I don’t know what I’m wanting from him and I know I’m not “fixable.” When I’m withdrawn I curl up in a ball and isolate myself (sometimes literally).

Not coping well with being alone unless it’s on my own terms.

I like spending time alone, and I need to do it a lot. I’m an introvert. I like doing my own thing and I find socialising exhausting. However, I’ll often find that if my partner wants to go out with his friends, I suddenly feel inexplicably sad and lost. I feel slightly resentful of him, but I can’t figure out why. I have literally no conscious objection to him going out on his own—I believe it’s incredibly important for couples to have their own social circles and hobbies and lives outside of that relationship—so it’s not that I’m not happy with him doing something that isn’t with me. I think it’s just my unconscious fear of being “left”.

Inability to make decisions.

This is a symptom of depression as well, but I guess my issue with decision-making is very much due to the fact that I don’t know who I am or what I want and so making a decision is tangled up in so much more than it is for an average person. For instance, despite the fact that I can’t cope with mess and need things to be clean and tidy (and suffer from OCD), I’m naturally an incredibly messy person. I seem to constantly have a ‘floordrobe’, because I don’t get around to putting my clothes away. Every time I try, I get distracted with thoughts of “hmm, I don’t know if this actually looks any good on me… maybe I should donate it? Maybe I should sell it on eBay? But then I’d have to take pictures and list it and monitor it in case anyone bought it and I needed to post it… argh just another thing in my head… maybe I’ll just donate it instead. But no… what if it looks okay on me? What if I put it with this instead? Is it the style I want for myself? How do I want to dress? What do I want to look like? I spent £30 on this item of clothing, so if I’m going to get rid of it I should sell it or I’m a bad person for wasting money… god I waste money so often… why do my tastes change so much and so quickly? I wish I wasn’t crazy” etc. and it’s just fucking exhausting. Same applies with my art materials, which are frequently all over my room (which is our spare bedroom, my office, has all my clothes/ make up in it, and it’s my “art studio” if you can call it that). I can’t figure out where they should go, how I should categorise or order them, where they belong. So they just sit on my floor, confused. And I often haven’t finished the project that I’m working on anyway (see the point about never being able to finish anything) so it feels hard to put stuff away. I’ll often go to put things away and then get distracted by how guilty or frustrated I feel that I haven’t finished the thing that I’m using those materials for. I just get lost in my head every time I have to make a simple decision about something.

Emotional dysregulation.

My feelings can change drastically over the course of a day but for no obvious reason. From one hour to the next I don’t know how I’ll be feeling. I can go from depressed to manic in the space of a day and do it all over again the following day. I’m not bipolar, but I do have difficulty regulating my moods.

Emotional flashbacks.

People with C-PTSD don’t tend to get visual flashbacks like people with PTSD, but emotional ones. So, flashbacks to the emotions that we felt, which we re-experience.

I’m still trying to figure out exactly how these affect me and what they are. Where do they come from and what triggers them? But what I would say is that it’s almost like that thing we all (I think…) experience, when you smell a familiar smell which reminds you of a particular place or person or experience. It’s a raw, visceral and sudden memory. It’s like that but emotional. You suddenly feel a bit of the agony or uncertainty or fear you felt in that moment or experience. Like a shitty emotional trailer of a movie you once watched (and hated). You want to stop watching it but you can’t, it’s stuck on repeat. I say “watching”: it’s less like you’re seeing it, more that you are experiencing the emotions you originally experienced when you watched the movie but you’re not actually watching it or seeing it at all. Your body is. Like a punch to the stomach.

Summary

I’m “high-functioning” because I’ve learned to deal with this within my own little bubble. I don’t know how, I just have. My internal feelings may be crazy, but I am pretty good at disguising it and not being outwardly volatile. I’ve never been violent towards anyone. I don’t shout and scream; I don’t cry very much. I’m occasionally snappy with people at the very most, or withdrawn and dissociated because I turn my feelings in on myself. Sometimes I hugely over-react in my head—I get irrationally and disproportionately angry at people for stupid things—but I never act on those feelings and over time, I can reason through them although it’s not easy.

I’ve managed to hold down a healthy relationship for four years. For many people with C-PTSD or something like BPD, this can be impossible to do. The fact that I am managing it means I am high-functioning. Does that mean it’s easy? Hell no. I am sure that my five years of psychotherapy have something to do with me being able to cope, and I’m still not all that good at it. But I am aware that there are people on the opposite end of the spectrum who have no quality of life and are unable to do the most basic things or hold down any interpersonal relationships.

If you think you have C-PTSD or similar, I’d recommend asking a doctor for a referral to a mental health service so you can be assessed. It’s not something you should diagnose yourself with, and you should seek medical assistance to deal with it.

If you do have C-PTSD, here are some things to remember:

It’s not your fault.

You are not bad or broken.

You can re-learn some of the developmental skills you lost out on early on.

You can re-train your brain. Everything that is “wrong” with you is learned behaviour, and therefore theoretically it can be unlearned. I don’t intend to minimize how hard it is to change how your brain works—I often feel like it’s impossible—but science shows it is possible. Don’t give up hope.

Let’s all be more open about this and try and combat the unnecessary and painful stigma, because it’s not deserved and it’s not helpful.

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