Why I’m shy about my Borderline Personality Disorder

Did you know Borderline Personality Disorder (BPD) formally known as emotionally unstable personality disorder, is one of the most stigmatised mental illnesses. But not in the way that you might think. Most people haven’t really heard of BPD, nor do they know much about it if they have. So, when I say it’s stigmatised it is not in the normal way, by that I mean it is not from those uneducated or ignorant. For example, depression is stigmatised by many as something that happens when people are sad, and they just need to snap out of it. Now, you wouldn’t find a mental health professional saying or agreeing with this, they would however, agree that depression is wrongly stigmatised and often by those who don’t know the full facts.

So, why and how is BPD stigmatised if most have never even heard of it?

 

BPD may not be one of the common mental illnesses that the average Joe has heard of. Yet it is highly stigmatised with those who work within the mental health profession itself.

Those who are meant to be non-judgemental, who are meant to help, who are meant to understand, who are meant to try and demyth the stigmas.

As stated by Emily Reynolds in The Guardian, “this highly stigmatised condition is misunderstood and frequently misdiagnosed”.

Despite BPD being found in around 7 in every 1,000 people in the UK (according to stats in 2006) it is normally excluded from awareness raising campaigns, hence the lack of knowledge about the condition in the general public. BPD is left out of the lime light that depression, anxiety, bipolar etc often enjoy. Which is shocking when you consider that 1 in 10 people with BPD will commit suicide. In a study conducted in 2017 it was reported that only 55% of organisations had equal access to specialist services for those with personality disorders. The study showed that there was a significant reduction in BPD sufferers contacting psychiatric services compared with conditions such as depression or schizophrenia. Furthermore, that their likelihood of withdrawing from treatment was significantly higher. In 2009 it was reported that some NHS trusts in England don’t even provide a service to those with BPD. I urge you to consider any other illness that affects so many people yet aren’t treatable by every NHS trust.

 

You’re lucky to even be diagnosed in the first place…

 

For most, a diagnosis is a self-diagnosis. GPs and mental health professionals fail to spot BPD to begin with, they don’t give it a consideration and most GPs who were asked, have poor understanding of BPD to even begin to diagnose it, despite them being the frontline of care in the UK.

 Tilly Grove “I battled to get a diagnosis for two years” despite it initially being mentioned to her during a psychotherapy appointment she never had a full BPD assessment.

She went on to say that her GP believed she wouldn’t meet the criteria for the assessment, despite no assessment being made, when in fact Gove meets all of them! So, she was considered manipulative and attention seeking because of her frequent self-harming.

“I wasn’t ill, I was just a bad person” – Ali Strick who had a similar experience to Gove.

You have been diagnosed BPD, now you’ll get help…

 

Unfortunately, this isn’t always true, diagnoses are not the end of the stigmatisation. Despite being viewed as manipulative for pushing for help and/or a diagnosis, a diagnosis doesn’t get you very far. For example, Grove was told that despite DBT being highly successful in helping those with BPD she wouldn’t qualify for it as she hadn’t self-harmed for a short period of time. It is also rarely available in many areas due to such lack of services for personality disorders, as mentioned above.

 

It’s the last thing someone with BPD needs

 

Living with BPD is a daily battle, sufferers battle daily thoughts of suicide idealisation. It impacts every moment of every day, here especially how you interact with people. Many with BPD are terrified of being abandoned and will do anything to avoid it happening. A person with BPD has very little if not zero control over their moods and intense mood swings. It leads to unstable and impulsive relationships with other people. It is easy to see why then that most with BPD take huge risks in life and often self-harm. Can you imagine living with all of this yet, having no help? Being told you’re manipulative? Being told you’re attention seeking? So, you stop self-harming, which then impacts your ability to get any specialised treatment? Who do you to turn when the profession meant to provide for you, shuns you?

 

They don’t like what they can’t fix

 

Take a moment, consider why, why this mental illness is so heavily stigmatised from the inside out. Let me throw this scenario at you, think back to when Drs had no cure for AIDs/HIV…now think of the common cold. If a Dr is faced with treating the common cold they feel adequate to do so, the years and years of training they’ve had, the hours of studying enables them to greatly help the patient, to fill them with facts and offer an endless list of medicine that can help with their symptoms and ultimately cure it. Now, when a patient with AIDs/HIV walks in, they feel inadequate, they feel helpless, clueless, like they don’t know what to do. You could say, it makes them feel stupid, it can’t be treated, it can’t be cured so why bother. Shun it away, give it no thought, ignore it. Man kind has forever shunned away what it fears as what it ultimately fears is the unknown, if man can’t fix it or treat it, man is scared of it and man will destroy and/or ignore it. Now, with constant pressure from those with the illness there is hope you can now live with HIV and pose no risk to those around you, it can be undetected within your blood! Now, they don’t feel so inadequate.

 

Let’s now come back to BPD. There is no cure, there is help but a cure is highly debatable, just like HIV. You can mask the symptoms, you can maybe make it undetectable, but you will not totally cure it. Treatment of BPD is not reliable, those being treated are the most likely to withdraw from treatment. Also, it is not one size fits all, depression and other illnesses appear a lot more clear cut when compared to BPD. There is clear evidence and studies to show what works across a broad spectrum with depression from talking therapies, CBT to mindfulness. It is not so clear cut when it comes to BPD. I therefore strongly believe this is the baseline for it being so stigmatised, they don’t like what they don’t know and can’t cure!

 

So, what can you do?

 

If you have BPD don’t read this and feel abandoned, after all we feel enough of that already. Feel special, feel unique, feel a part of a group of like – minded souls experiencing the same and feel empowered. You are where you are despite many odds being against you. Despite the profession deigned to help you being highly unhelpful you are where you are today and that is a huge achievement in itself!

I have BPD, I too haven’t had an assessment, but I’ve been told it several times before from many psychiatrists. I may not have a piece of paper from a GP telling me I have BPD but I have it. I know I have it and I’ve yet to meet a professional who disagrees. But I have also yet to meet one who will concrete my diagnosis. I have also yet to receive tailored treatment for it. Do I despair, often yes, but on the whole no. During my work I have met so many amazing people with BPD, I take comfort in them, comfort in knowing I am not alone.

 

Take back control

 

If you have BPD to me, it is simple, we are not lucky enough to be able to fully rely on the NHS. But there is one person we can rely on, all be it in varying degrees. YOU!

Its about taking back control. You know that the NHS doesn’t always have your back, you can’t rely on them, but you can yourself. It is the modern era and for that we are lucky, we have the tool you are using right now to read this, the internet. You have access to endless information, you can access DBT books and workbooks to name a few.

Being unable to rely on the NHS for BPD is one of the reasons I began to self help. It is what helped my stronger than your mind academy come to life. It is about empowering, developing and learning how to look after yourself. We may withdraw from treatment, but we can also choose to go back to it again and again and again and again. We do not give up. I go back to the workshops in my academy so often I daren’t count! I know and accept I won’t find or do one thing that helps me endlessly. I know I need to do small things, often and repeatedly and that what may work for me one month or one hour may not work the next. But I will not stop building a list of help and I will not stop sharing that list within my academy! Take back control its time to become stronger than your mind!