This is my second post sharing [*read-boasting] about my first article for a genuine human journalist :) I was sent these questions by the journo to form the answers for my published patient file on my mental health conditions.
The article was published in the March edition of PharmaTimes and I am thrilled to have been asked. The magazine is clinical in tone, aimed at health care professionals, so I was not to swear or say anything too offensive or rock-the-boatish *see no evil hear no evil speak no evil-shhhh*. This was a challenge, but did not limit my enjoyment of writing. Writing is when I’m most at home :)
I hope you find this useful in content, and it also shows I can write in more than one style-WHO KNEW (!) This is the full version. The magazine version is shorter but I didn’t want to waste my other words so am publishing them here 😊
Which mental health conditions are you diagnosed with?
I have a dual diagnosis of post-traumatic-stress disorder (PTSD), and Borderline Personality Disorder (BPD). People usually associate PTSD in their minds with people in the military, though in my case the PTSD illness was brought about by having been abused as a child. PTSD can be activated by a single traumatic event, however my PTSD came from having suffered repeated trauma, spanning the entire first fifteen years of my life. I have what’s known as complex-PTSD, as my trauma represented a tangled mix of sexual, physical and emotional abuse, both in and outside the home, with multiple abusers. As you’d expect, these horrendous early experiences profoundly affected me as a developing child and adolescent, and even now as a thirty-something adult and mum of two-the psychological effects live on inside me with the intrusion of PTSD. I see my BPD diagnosis as very much inter-linked with the PTSD, and early sustained trauma undoubtedly lies at the root of these mental health difficulties having developed in the first place. BPD is a surprisingly common mental health condition though one which is rarely talked about, largely due to societal stigma. BPD is complicated to explain, but it is basically a disorder of extreme emotional sensitivity and inter-personal reactivity. Initially I was diagnosed with Bipolar disorder and put on mood stabilising medication, but once my previously suppressed abuse history started to come to light I found myself with my current diagnostic labels.
How did you cope with your diagnosis?
The whole experience of psychiatric assessment and evaluation was an extremely stressful and anxiety provoking process. I had avoided going to the doctors for years and years about my mental or physical health, so just getting to a point where I could sit in front of a psychiatrist and talk was huge for me. Diagnosis was an incredibly emotional process. When I heard those words I felt a mix of all kinds of emotions- fear and trepidation for my future, shame at being “mentally ill”, plus a whole load of relief, particularly with the complex-PTSD diagnosis, which explicitly put my psychological difficulties in an accurate trauma-based context. The abuse memories flooding back to me as they did explained so much to me about what had been wrong with me for so many years. Therefore I no longer blamed myself for my psychological problems. I knew it was about the trauma, and that anyone with a similar background to me would most likely share similar problems. Despite it being so difficult, I am so glad in hindsight that I went through this painful diagnostic process, as it has given me essential answers to why I’d struggled with my mental health for such a long time. Once I knew what was wrong, I could then go about trying to fix it.
Have you received any treatment?
I was referred to the NHS community mental health team (CMHT), around four years ago, and since then I’ve received both pharmaceutical and psychological treatment in the community. Finding the right medication was very much a trial and error thing, and a lot of medications had a very numbing effect which made it difficult to function on a daily basis. Some medications even made my symptoms worse rather than alleviating them, but thankfully I am now settled on a low dose anti-depressant (Paroxetine) and also Pregabalin which has proved excellent for reducing my general levels of anxiety, with minimal side effects. During times of crisis I took Benzodiazepines and sleeping tablets, which were invaluable at helping me tolerate particularly bad traumatic flashbacks, panic attacks or insomnia, all of which are common in PTSD. All the way along I was given significant choice over my treatment and nothing was forced upon me, which was massively important, as people like myself with difficult childhood histories often find it very stressful to be in situations where they are out of control. I also found it immensely difficult to trust people, particularly authority figures such as doctors, so it took me a while to build up positive trusting relationships with the mental health professionals assigned to my care. That was definitely the most challenging part of treatment for me-building and maintaining positive therapeutic alliances. Due to my mental health and personality difficulties I tended to experience a lot of conflict in my relationships with my regular care team, and at times when I was dealing with strangers in crisis type situations it was even harder due to my emotionality and extreme sensitivity. Fortunately these days my relationships with my care team are far more secure and relaxed, and I have built up a very positive therapeutic relationship with a psychologist I’ve been seeing over a long-term basis. Continuity of care with a clinician suited to me has been extremely healing and reparative, allowing me to build up trust and the ability to form health emotional attachments.
Can you describe the symptoms you experience, and whether they have a significant impact on your daily life?
Life with PTSD and BPD is tough and grueling on a daily basis, and it’s quite difficult to get across to people what exactly it feels like. On the BPD side of things, I’m an extremely sensitive soul, with an emotionally wounded sense of self, so every word, action, thought, feeling, or emotional response is heavily amplified and felt to an extreme almost excruciating level. Moods can switch in the blink of an eye, and in any given day I can experience the whole spectrum of moods from elation to despair in full technicolor which makes daily life an unpredictable emotional rollercoaster. I am rarely settled or content due to my chronically high levels of anxiety and regular depressive episodes which are ever shifting and demand skillful use of the emotional-regulation and self-soothing coping strategies I’ve been taught in therapy. During acute phases of illness self-harm and suicidality can be high. Although it seems nonsensical why anyone would choose to deliberately hurt themselves, sometimes when my distress was so bad self-harm was something I turned to, to alter my emotional state and soothe that distress; externalising the pain and trying to find any way to get myself rid of it. My PTSD brings about daily flashbacks which vary in severity but remain a constant feature of my mindscape. Each day I am reminded of horrible traumas-feeling that I am re-living them. Flashbacks are brought about by a variety of triggers or reminders in the daily environment that take me right back there, as though I am living the trauma all over again. I lose a sense of time and forget where I am. A flashback can be triggered by so many unpredictable things, so it’s impossible to avoid them-the best I can do is manage them as best I can with the skills I’ve been taught. I can be triggered by many things-it could be a person who visually resembles an abuser, a specific type of car, a smell, being looked at or touched in a certain way, facial expressions. I am triggered by the dark, by significant dates like birthdays or Christmas. You name it. Anything that links up with my past in any way instantly transports me right back there- the panic comes from nowhere, and suddenly I’m feeling like I’m losing control and feeling dizzy, disoriented and extremely upset and in need of comfort, which can be unbelievably difficult when it happens in public. At my worst I’ve even suffered black outs and seizures. When my anxiety rockets, my brain responds by dissociating. Dissociation, in simple terms is zoning out, and is something we all do to some extent. But my brain, which was exposed to trauma from such a young age, learned to dissociate transforming it into a default reaction to anything stressful I encountered. So now as an adult, whenever I sense anxiety or threat, and when the panic gets too unbearable I dissociate. My brain spontaneously shuts down and I lose awareness of what is happening around me. It’s like I’m there, but not really there-in a snow globe detached from everything. To deal with this I have to try and ensure I ground myself in the present so I can remain aware and able to concentrate. This remains a struggle though and is my most resistant symptom. PTSD and BPD are long-standing invisible illnesses and the psychological effects on the sufferer are huge.
Are you happy with the NHS care you have received?
Yes, I’d say on balance I was satisfied with my NHS care. It took several months of being on the waiting list before I was seen, which was quite frustrating, though more or less what I was expecting as I know how much of a demand there is for quality mental health care and how over-stretched NHS services are. Once I was ‘on the books’ the care I received was, on the whole, pretty excellent. Because of my personality difficulties and high sensitivity, coupled with the high level of anxiety and threat that registers when I meet any new person, my interactions with medical clinicians were fraught with difficulty. Some clinicians I felt safe and secure with, and was able to open up to with the confidence that I’d be met with an empathic response. It was rather hit and miss though, and some people I just did not get along with, nor feel were helping me. I would sometimes feel provoked, and sat through a fair few complaint meetings with CMHT (community mental health team) managers, or crisis team managers. To be fair, they did do their absolute best with me to adapt to my complex needs while I was so un-well, and I appreciate I was not always an easy patient for them. I have had an up and down relationship with my psychiatrist, but she has been a consistent feature of my care and followed my mental health journey all the way through from diagnosis to breakdown to recovery. Some of the conversations I had with mental health professionals I will never forget, as they were life- changing, life and death ones. For that reason I am forever grateful for their caring interventions. The stick out like a sore thumb aspect of mental health care that I’d single out as requiring room for improvement is the crisis team, however aside from them I am very much happy with my care.
Aside from medical intervention, what do you find has the greatest impact on your ongoing recovery?
For me, becoming well informed has been my most consistent coping strategy. From the moment my psychiatric assessment appointment letter landed on the doormat I took it upon myself to learn absolutely everything I could do about mental health. I researched and read up on all the mental health symptomology, absorbed everything I could about it on a factual level, then began to read blogs, books and memoirs written by people with diagnosed mental health problems. This gave me a fascinating insight into other people’s minds and how they perceived their illness, as well as how they managed their symptoms and what their recovery journeys were like. I compared my experiences with theirs and made links, which helped me make sense of things in my head and gradually process everything that was happening to me on both an emotional and intellectual level. I read books which inspired me, written by people who had gone through very similar things to what I was going through, but reached the other side. Knowing recovery was possible (because other people had done it) was one of the things that got me through my darkest suicidal spells. The book that was a particular help to me was Carolyn Spark’s ‘Recovery is my best revenge,’ which I read during a particularly dark spell and inspired me to continue living. Aside from this I engaged in complementary therapies, namely Reiki. Reiki was perfect for relaxing me in between conventional mental health talking therapies, and also allowing the release of negative energy and tension from my body. Recently exercise has been a new inclusion to my recovery process. I completed R.E.D (run every day) January to fundraise for Mind and that kick-started my year in a very positive way, creating a positive exercise habit which I have continued with and intend to keep up, as there has been a noticeable lift in my mental health since I began. And of course writing. Writing is my passion.
Have you personally encountered any social stigma or discrimination related to your mental health disorders?
I think society is slowly getting the message that it is very much not OK to discriminate or stigmatise people on the basis of mental health, so I haven’t necessarily experienced people saying overtly cruel or attacking things.
However, stigma and discrimination can manifest in subtle ways, and as a PTSD/BPD sufferer I have most certainly felt it. I think talking about depression or anxiety is relatively easy these days, and Stephen Fry has certainly had a big impact in making Bipolar more socially acceptable, linking it in people’s minds with quite positive traits like high achieving, creativity, however disclosing to someone that you have a disordered personality remains pretty awkward, and is usually enough to clear a room full of people fairly quick! I think unfortunately the public are still clinging onto some very outdated and inaccurate assumptions about what mental health problems are about, and also assumptions about people who have the label “mentally ill” attached to them with all the negative connotations of that. I think every person with mental health has at one time or another been frustrated by the insensitive comments or platitudes offered up by friends, family, and worst of all, sometimes even medical professionals. Because PTSD is not understood as being a natural response to childhood abuse, people have struggled to understand why I’m still suffering psychological reactions to traumas that happened decades ago. I have been told “not to dwell on it” to “rise above it” to “leave it in the past” and to “not think of it” which are all very invalidating of my pain, and also ridiculous in light of how much PTSD is a brain disorder. Piers Morgan was a prime example of this lack of understanding, demonstrated by his ignorant opinions expressed via Twitter regarding Lady Gaga’s recent PTSD disclosure. Unfortunately traumatic memories do not have a sell by date, and believe me, if I could forget all this happened and not have flashbacks and nightmares and dissociation, I would.
What inspired you to become a mental health blogger, and what do you hope to achieve with it?
I was always fascinated reading blogs written by bloggers with BPD, Bipolar, PTSD and child abuse histories. I admired their bravery in publishing such personal and intimate thoughts, feelings and personal experiences, but never at that point believed I’d be able to do anything like that myself due to my insecurities and fear of judgement. I used journaling as a way of processing my feelings while I was undergoing trauma therapy and I would often share my writing with my therapist and receive praise for it which boosted my confidence, so when a friend said she was going to start a blog, I said I’d take the plunge and give blogging a go. That was a whole year ago, and I am not exaggerating when I say blogging has changed my life. I’d describe blogging as my happy addiction. The best thing about it is it has brought into my life a community of wonderful supportive people spread across the globe, some of which have become really close friends. Because I now feel strengthened and enriched by these online connections with people who are empathic and really ‘get’ my illness and understand and accept me for who I am, this has enabled me to gradually change my focus, so I am not longer just writing posts to cathartically offload my negative feelings but I am writing with far more of an intent to inspire others. I try and explain mental illness in ways that people understand, and also correct some of the societal misperceptions about what BPD/PTSD and mental illness generally is about. Personally, I think the best way to influence attitudes in society is by abuse survivors and mental health sufferers finding their unique authentic voice. A textbook description can only give so much information about what mental illness feels like. If you really want to know what it feels like, ask the people who suffer with it, and they will tell you. I’ve now branched into drawing sharpie doodles on my summerSHINES blog which tap into my creativity to describe my complex emotions in an accessible visual way.
What advice would you give to somebody recently diagnosed with a mental health condition?
Being formally diagnosed with a mental health condition can be a huge emotional shock to the system, even if unofficially speaking you have already been suffering for a long time. A diagnosis can still take a great deal of psychological adjustment so allow yourself time and space for your diagnosis to sink in and for you to figure out your feelings surrounding it. People will react in in a whole variety of ways when a mental health diagnosis is made, but the important thing to remember is any reaction is valid. Mental health diagnoses feel personal in a way physical health equivalents don’t. At some point you will have to give consideration into who you choose to disclose your diagnosis too, being prepared for the fact that while many people will be thoughtful, caring and considerate, not everyone will be. That is the unfortunate reality of mental health stigma in society and it can be difficult to make decisions on who you allow into that circle to talk openly to about your mental health. That is why some people prefer to leave discussions regarding mental health to counsellors and other professionals. Aside from deciding who you are comfortable discussing your diagnosis with, my advice would be that a mind-set of self-compassion is absolutely essential where mental health is concerned. Too often we are inclined to blame ourselves for having a mental health problem; perceiving it as an indicator of personal weakness, whereas in truth all the people I know with mental health conditions demonstrate admirable strength and courage. To be able to tolerate and manage distressing symptoms, and invisibly do battle with them every single waking moment is wearing and demands huge persistence and inner strength. Our courage is often vastly underestimated. Finally, my advice would be to read up as much information as you can from reliable sources such as Mind, and educate yourself-the more the better. The more personal insight you are able to gain about your mental health condition, the better equipped you’ll be to move onwards in your recovery.
What do you consider your biggest achievement to date?
Honestly, my biggest achievement, simply put, is staying alive. Recurrent suicidality is something I have had to fight against as part of my mental health disorders. My battle with these illnesses has been a life and death one, and during the acute phases of my illness, when my hopelessness and desperation was at a peak, I made several attempts to end my life. Fortunately I survived and live on to continue my recovery journey and publicly tell my story to hopefully inspire others who may be in a similar place. I am extremely proud of successfully weathering all the repeated crises I had. It took a few stays as an inpatient in a psychiatric unit to keep me safe at times when I felt unable to do that, but aside from that I feel proud that (with intensive NHS support) I was able to survive. I have literally been through hell, and made it through, so my sense of personal strength and mastery is better than it’s ever been. I no longer feel like the abused girl who was helpless and powerless and have a strong identity as a survivor. I am far less ‘the abused girl’, and far more the fearless warrior.
What has been your biggest frustration?
My core frustration has been the way my mental health conditions have limited my career prospects. Because of the constant anxiety, the unpredictable flashbacks and panic symptoms, my tendency towards low moods, as well as the general instability of my mood and energy levels, it has been impossible for me to find a full-time career of which I know I am capable of. I graduated with a BSc in Human Psychology and a MSc in Work Psychology and Business, fully intending to build a career, but it just hasn’t worked out so far as I intended. Because of my PTSD I am only able to work for relatively short periods of time, as I have to work around my dissociative spells which make concentration more taxing, plus I fatigue quickly. This all places limitations on me, so the frustration comes from a sense that I am not achieving my potential of what I could have achieved without these chronic difficulties which cast a shadow over my life.
What are you hopes/fears for the future?
I often feel overwhelmed by the enormity of how much more recovery there is that lies ahead of me. Recovery is hard work and tiring, and I know if life stresses increase that there is always the risk of relapse and me becoming seriously unwell again. My biggest fear is my suicidality will return, however I am working hard to overcome any anxieties I have about my future and go forward into the future with strength and optimism. My hope is that I will continue to make great strides forward as I have already done in the last few years since I was first diagnosed. I know PTSD and BPD to some extent will always be a part of my life, and are illnesses that are difficult to treat as they are so ingrained and also heavily brain based-so my brain is most certainly wired differently than a non-traumatised brain would be, but I hope that in time the traumatic imprints from the past will exert less and less influence over my daily wellbeing, life and activities. I can never forget what happened to me in those early formative years, but I am gradually reaching a sense of acceptance about where I’m at and how best to alchemise those awful experiences into something positive to benefit and support other survivors like myself. I am hoping to work on publishing several books, including a memoir of my life story. I also wish to progress into freelance writing and awareness-raising work in the media. I want to become someone who draws on their personal experiences and speaks out bravely and publicly about a variety of sensitive topics such as childhood abuse, sexual assault, and mental health in general. I am passionate and driven to be a person who educates, influences, and drives change in how people with mental health conditions are perceived in society, shattering some of the myths and stigmatised attitudes which are still lingering out there. If I can touch the life of anyone who has a similar history to me and make it a little easier for them-that would be my dream come true.