Thursday, 15 October 2020

My Experiences with Borderline Personality Disorder

(Disclaimer: The information given here is mainly about my own experiences of Borderline Personality Disorder. The ways I act, react and feel are not necessarily universal to all people with BPD and this should not be used as medical advice or a replacement for formal assessment. If you feel you have any symptoms such as mine, and especially if you have been self harming or suicidal, I urge you to contact your GP as soon as you can. Please let someone know how you feel. You deserve to get help.)

(TRIGGER WARNING: Mentions of Poor mental health treatment, Stigma against BPD, Self harm, Suicide, Alcohol and Sexual behaviour)


It was World Mental Health Day a few days ago. A day where I always feel the obligation, as a person with multiple mental illnesses, to do something such as write a blog post. I try to vary the specific subjects such as talking about one of my illnesses, how I cope with various ones, and/or the importance of awareness days, as well as supporting people every day.

Unfortunately life got in the way this time (doesn't it always?!) and I didn't manage to write my blog post in time. Mental illness happens every day though, not just on awareness days, so any day is a good day to raise awareness, talk about the importance of support, reaching in as well as out, having appropriate services for anyone who needs them etc.

Today I want to talk about a mental health diagnosis I have that is often misunderstood and stigmatised; Borderline Personality Disorder (BPD). Let's start with the diagnostic criteria:

The following is found on the NHS website:

Assessment

Internationally recognised criteria are used to diagnose BPD. A diagnosis can usually be made if you answer "yes" to 5 or more of the following questions:

  • Do you have an intense fear of being left alone, which causes you to act in ways that, on reflection, seem out of the ordinary or extreme, such as constantly phoning somebody (but not including self-harming or suicidal behaviour)?
  • Do you have a pattern of intense and unstable relationships with other people that switch between thinking you love that person and they're wonderful to hating that person and thinking they're terrible?
  • Do you ever feel you do not have a strong sense of your own self and are unclear about your self-image?
  • Do you engage in impulsive activities in 2 areas that are potentially damaging, such as unsafe sex, drug misuse or reckless spending (but not including self-harming or suicidal behaviour)?
  • Have you made repeated suicide threats or attempts in your past and engaged in self-harming?
  • Do you have severe mood swings, such as feeling intensely depressed, anxious or irritable, which last from a few hours to a few days?
  • Do you have long-term feelings of emptiness and loneliness?
  • Do you have sudden and intense feelings of anger and aggression, and often find it difficult to control your anger?
  • When you find yourself in stressful situations, do you have feelings of paranoia, or do you feel like you're disconnected from the world or from your own body, thoughts and behaviour?
As well as talking about what BPD is, how it is diagnosed and treated etc, I want to speak about my experience of living with it. I have had symptoms of BPD for as long as I can remember, but I have been formally diagnosed since 2017. I have various mental illnesses, whose symptoms overlap, but the ones I think I can attribute to Borderline Personality Disorder are explained below:

  • I am terrified of being alone, as well as rejection. I have practically begged bullies to stay "friends" with me so that they wouldn't take away my real friends and leave me without anyone. I have constantly phoned a partner when they hadn't spoken to me for a few days, to find out why, in the hope I could convince them to not dump me. (It didn't work). I go through regular phases of reassurance seeking which I'm sure annoys my friends, no matter how kindly they respond. No matter how many times I try to get reassurance that my friends won't leave me however, I can never reassure myself. I go round in circles with this. I admit I have checked a partner's messages too,  to make sure they hadn't found someone else. I also wanted to find out what they "really" thought of me. What I found out upset me a lot, but honestly I should've just spoken to my partner. Communication is so important! There are probably more examples of seeking reassurance, avoiding rejection/perceived rejection etc but I think I've said enough on that subject.

  • In the past, I have gone from relationship to relationship, with not much of a break between them. I just couldn't bear being alone and single. A lot of the relationships I've been in have been pretty intense and unstable; not always through my fault though. I have been in at least one definitely abusive relationship, and although I made mistakes myself, I would never blame myself for how they treated me. Other relationships have involved love, marriage, and children being mentioned very quickly; burning out almost as soon as they began. I have also mistaken having feelings for someone, for being deeply in love with them. I have made everything about them and believed we had a future, even when it is pretty clear they didn't feel anywhere near the same way. 

  • I still don't know what kind of person I am. I can say that I believe I am kind, passionate, and determined, but even then, I doubt that. I always rely on other people to prove they know me, and to tell me what kind of person I am, what makes me "me", what I'm good at, what my trademark is etc. Any comments about my character, I feel deeply. Good and bad. I'm more likely to believe the bad ones of course, but that's not necessarily a BPD thing. My unstable sense of self can even get so rocky that I literally don't recognise my own reflection in the mirror. The person in the mirror could be anyone, but I do not feel they are me. I have days where I feel attractive, and days where I feel extremely ugly. Nothing has physically changed, only my moods. Again, not necessarily a BPD thing, but it's worth mentioning as a mental health thing. I would love to truly know who I am, and I often feel lost and not grounded because I don't know.

  • As for impulsive activities, I do engage in some, but not as many as I used to. At university in particular, I would engage in risky sexual behaviour. The only way I can explain why, is to say that I had very low self esteem, I often felt alone and unwanted, and that one night with someone I barely knew would make me feel wanted, if only for a few minutes. I would always feel guilty and ashamed afterwards, but I try not to now. As well as this, I am prone to drinking impulsively. It is a coping mechanism and although I know it is unlikely to lift my mood when I am particularly depressed, it feels like a good idea at the time! I drank a lot in my later teens and 20's. It was something I'd do to celebrate, commiserate, destress, forget, or just cope. It was binge drinking and thankfully I don't do it nearly as much now. It didn't help and I could've damaged myself. Right now, I don't self harm much, but I do still do it impulsively. A bad day, a bad comment, a low mood, a stressed mood, agitation, too many thought, too many mood swings. It doesn't take much. These are some of the most potentially dangerous impulses I have/had, but there are others that would take all day to talk about. 

  •   I am suicidal. I'd say passively nowadays (thanks to good antidepressants and mood stabilizers), but I have had plans, and almost-attempts in the past. I have made "threats" too, although I do not like the term. It feeds into the stigma (which I will explain below). As in the previous post, I self harm occasionally too (it used to be every day though). 

  • I used to have very severe mood swings, but thanks, again, to mood stabilizers, these are not so bad now. These mood swings can go on for hours, days, maybe even a week. They are very hard to cope with and when my moods are particularly high, I am scared about the comedown. Sometimes I can very rapidly go from deeply depressed, to anxious, angry, and hyper, then back down again. Sometimes I feel all these at once. For me, that is the worst and is often when I will feel more suicidal or self harm badly.

  • I feel very lonely and empty on a regular basis. Most of the time, this is how I feel when I'm not having mood swings. When I feel empty, I find it hard to respond to the question "how are you?". Sometimes I even think I'm doing ok, when I'm really not. 

  • I can feel intensely angry, but not very often. I act in rather than out too (punishing myself rather than lashing out at others). I can have kneejerk reactions to things but find it hard to express myself. Sometimes I will act without thinking but thankfully that has not involved me doing anything physical as a result. 

  • In stressful situations I often dissociate. This involves feeling as if nothing is real. I might not feel as if I am in my own body, or even that I am real. It can last from a few minutes to a few hours. The stressful day, or moment can go by like a blur and I'm often not sure of what I said during that time. I may have lashed out verbally, or had a big panic attack, and I just don't remember the details. There are a couple of times I can think of. One time, I was on holiday with a partner. He was threatened by someone in a bar. I knew I was shouting and swearing at this person but I honestly cannot remember what I said. I burst into tears and was shaking afterwards. Another time, I was at a Work Programme induction, where I was taken into a group session without my prior knowledge. At the time I found group situations terrifying and extremely stressful. I know I spoke over the person leading the session, and apparently had a panic attack that was severe enough for me to be led out of the room. I know I spent the rest of the session signing some documents a work advisor put in front of me. I couldn't even tell you at the time what they were about though. I managed to sign them but I didn't read them and it was as if I was on autopilot. I often found Work Programme appointments very stressful and if I wasn't dissociating, I was paranoid. I used to believe any unfamiliar car or van outside my drive was a government official spying on me. If a stranger looked at me for a few seconds longer than "normal", I would believe they were spying on me too. I still find myself getting paranoid about various things, but I am a little better at calming myself down. I can ground myself a little more effectively too.

Treatment

I feel like all these symptoms are a lot to cope with. I have been at crisis point on multiple occasions and you'd be forgiven for thinking I had somewhere to turn when things become too much. Unfortunately, a common misconception about BPD is that people with it are too reliant on services, so mental health teams often discharge us before we are ready. It is very hard to convince someone you need help, especially when you are in a distressed state. It can look like over-reliance even when you truly need that help because you are in crisis. If you look at some of my previous posts, you will know that I have been assessed multiple times by the Access (Crisis) team and Community Mental Health team, and discharged straight after, or after a few sessions of help, even when I clearly wasn't ready. I believe it would take something drastic before I would have any intense help. Due to lack of funding and resources, however, I don't think I will ever get enough appropriate help.

According to NICE, therapy for BPD may include Dialectical Behaviour Therapy (DBT) if self harm is a particular issue. Brief psychological interventions (less than 3 months) are not recommended specifically for BPD either. Choice of therapy should be tailored to the individual's needs. In theory, this sounds promising, but as someone who was only ever offered a few months of CBT in Primary Care, and 4 sessions each of Distress Tolerance, and Self Compassion Therapy, in practice the needs of an individual with BPD are not always met. I think it mainly depends on how much knowledge your healthcare professionals have of this condition, and what sort of resources are actually available in your local Mental Health Team (be that Primary Care / IAPT or Community Mental Health Team/Secondary Care). 

Medication

In my experience, various mental health professionals have said that, with BPD, medication rarely helps and certainly isn't the be all and end all of treatment. It can help though, and does have a place in treatment. For me, Duloxetine helps the depressive moods I have, and Aripiprazole helps my mood swings. It allows me to get to a level of mental wellbeing where I am able to actually engage with therapy. Without medication, I would simply be too unstable and suicidal to accept any help. This might sound drastic too, but I do believe I would be dead without mental health medication.

Myths

There are various myths about people with Borderline Personality Disorder. A big one is that we are seen as manipulative. The truth though, is that we struggle to reassure ourselves that people actually want to spend time with us. We are scared of being rejected and sometimes we will do seemingly drastic things to gain that reassurance. 

We are seen as "threatening" self harm and suicide too. Actually, many of us are suicidal and do self harm but we do not do this/talk about this as a threat. We may in fact be asking for help and trying to be honest about how ill we are. People often misconstrue this though, especially when we have the BPD label. 

Also, we are said to be over-reliant on mental health services. That is not necessarily true though, and certainly isn't a particular symptom of BPD. We ask for help because we need that help. Mental illness is invisible too. Someone can seem fine on the outside, when they desperately need assistance. It can take presenting with physical injury for a mental illness to be taken seriously. Even then, the person may just be patched up in A&E then sent on their way with little to no aftercare. Last time I overdosed, I had to specifically ask to be seen by the Psychiatry Liaison team. I feel I've had to fight and almost beg for any scrap of help I've received. 

You can read about other myths here but I would advise avoiding this, or at least being careful not to overload yourself if you find these triggering at all. I am careful to only go on the myth-busting sites, rather than exposing myself to places with very upsetting misinformation. 


How Do I Cope?

I do have some unhealthy coping mechanisms, which I certainly wouldn't recommend, but I am learning healthy coping mechanisms too, and trying to replace the not-so-healthy ones.

For me, talking to trusted friends and family helps, but being in therapy can give me space to vent my feelings without judgment or fear of a loved one's reaction. It all depends what you feel ready for but in my experience, bottling it all up is a very bad idea

Having distractions can help with coping too. Gaming, cross stitch, going for a short walk (only when not in an unstable, suicidal place in my head though), studying short courses, reading, watching an episode of something or even a short Youtube video can help. I find I get overloaded very easily, and that can lead to major stress and self harm. I may manage a film, but when it seems too long or too involving, a few simple funny or cute Youtube videos will at least get me through some of the day.

If I'm particularly agitated, keeping my hands busy can help calm me down or at least channel some of my frustration. I am a lover of baking, and focusing on a task such as this, and creating something delicious can help me get through if not boost my mood even! The result is a tasty treat and the fact that I haven't punished myself for however many minutes or hours that particular bake takes.

When dissociating, I have learnt two things that sometimes help. 

                    1. Grounding. This involves doing simple things to reconnect myself with the outside world. It intends to remind me that the world around me, the people around me, and myself are real. It also brings me to the present time. One way of grounding myself involves focusing on one thing that stimulates each of my senses i.e. something I can see, something I can hear, something I can smell, something I can feel, and something I can taste. Even focusing on just some of these senses can ground me slightly.

                   2. Safe Place. I'm still learning and practising this one, as I find it hard to focus and take myself away from whatever stressful situation has triggered my dissociation. It involves imagining a pleasant, calm place that can either be real or something completely made up. An example could be a quiet, sandy beach. I imagine myself there at night, with no one around. Again, I can focus on my senses in order to make that place as real for me as possible. I may think about the taste of a fruity cocktail, the smell of the sea, the sound of the waves or the feel of a gentle breeze through my hair. Once I feel calmer, I can gently bring my awareness back to the present moment in the hopes that I will have stopped dissociating and feel more able to deal with the situation I am in, or simply walk away from it if that is possible. 


Conclusion

So, I am in no way a success story, and I'm definitely not looking for sympathy (well, maybe a bit if I'm having a bad day?). I simply wrote this blog post to let you know about how Borderline Personality Disorder feels for me, and how my experiences of it compare to the diagnostic criteria, recommended treatments etc. 


Resources

Diagnostic Criteria - https://www.nhs.uk/conditions/borderline-personality-disorder/diagnosis/

NICE guidelines for Borderline Personality Disorder - https://www.nice.org.uk/guidance/cg78/chapter/1-Guidance#general-principles-for-working-with-people-with-borderline-personality-disorder

MIND Dialectical Behaviour Therapy - https://www.mind.org.uk/information-support/drugs-and-treatments/talking-therapy-and-counselling/dialectical-behaviour-therapy-dbt/

MIND About CBT - https://www.mind.org.uk/information-support/drugs-and-treatments/cognitive-behavioural-therapy-cbt/about-cbt/

IAPT - https://www.nhs.uk/service-search/find-a-psychological-therapies-service/

Community Mental Health Teams - https://www.derbyshirehealthcareft.nhs.uk/services/mental-health-and-emotional-wellbeing/neighbourhood-community-support/cmht-adults-working-age

Five things people get wrong about BPD - https://www.sane.org/information-stories/the-sane-blog/mythbusters/five-things-people-get-wrong-about-bpd


If you feel you need to speak to someone, after reading this blog post, I am leaving some mental health links below. Please also comment below, if you know of any other links to inclusive mental health helplines.

Samaritans: https://www.samaritans.org/how-we-can-help/contact-samaritan/?gclid=CjwKCAjw5p_8BRBUEiwAPpJO61KYfF83b5CLcYslbI7Nz2_yJ-SwSqWHR31ZLgMF0nGpFFFqDv_VDRoCN9kQAvD_BwE

Mind: https://www.mind.org.uk/about-us/contact-us/

Stonewall: https://www.stonewall.org.uk/help-and-advice

(Please be aware that a lot of these links are for listening services. The people you speak to are unlikely to be allowed to advise you, and should not replace speaking to your GP, mental health professional, or even A&E if urgent. They do have a place in mental wellbeing however, and it can be helpful to hear a friendly, compassionate voice).


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