Overlooked and Downplayed: The Difficulty in Getting an Emotionally Unstable Personality Disorder (EUPD) Diagnosis
It took me years to finally get an EUPD (Emotionally Unstable Personality Disorder) diagnosis. Years I can’t get back.
Explaining what EUPD is like isn’t easy. To simply refer to it as a personality disorder doesn’t give the depth and diversity of this mental illness; yes, it affects your personality, but it’s more than that.
All your emotions are amplified. It feels like you’re an exposed nerve. Your moods fluctuate throughout the day, you’re anxious all the time, relationships are challenging and difficult to maintain, and knowing who you are feels nigh on impossible because you lack a solid sense of self.
Not everyone’s experience will mirror mine, but those contrasts we all have don’t diminish the struggle that EUPD presents. This post is but a window into my personal experiences.
From an early age, I knew what I felt wasn’t normal. I was so different from my peers; I lacked the genuine enthusiasm they had for life. I’d experience short bursts similar to theirs, but I’d always rapidly come down from that high and enter into a depressive state.
To be diagnosed, you need at least five of the below nine traits:
- Fear of abandonment.
- Unstable relationships.
- Unclear or shifting self-image.
- Impulsive, self-destructive behaviours.
- Self-harm.
- Extreme emotional swings.
- Chronic feelings of emptiness.
- Explosive anger.
- Feeling suspicious or out of touch with reality.
I meet all of them, in one form or another. However, the most notable symptoms for me are the fear of abandonment, the instability of relationships, impulsivity, extreme mood swings, and uncontrollable anger.
Any one of those symptoms is tough to handle, but several of them? It’s a powder keg waiting to explode. The only problem is, it’s waiting to go off every single day. Life can be a rough enough ride on its own without EUPD added into the mix.
As I grew older, and my behaviour became more erratic, I found myself desperately needing answers — I couldn’t go on like this. So, in 2015, I pushed for my GP to refer me to a specialist. I wish the process was as simple as it sounds, but it was one of the most stressful experiences I’ve gone through.
Right from the beginning, I was met with a tone that shouldn’t belong in mental health services; there was this air about them, as if I was an issue they’d rather not deal with. At first, I wondered if I was taking their words too personally, falling back on my old habit of reading between the lines and coming to the wrong conclusion. But as the sessions with my assigned community mental health nurse progressed, I realised it wasn’t in my imagination.
It wasn’t that my mental health nurse didn’t offer a safe space, but rather that they did so in a way that made me uncomfortable. When I tried to express the issues I was having, they acknowledged them but never really listened.
Eventually, I found excuses not to attend my sessions, soon followed by me asking to speak to someone else. I needed someone to be invested and care about my welfare. It took a lot of persistence, both from me and my partner, but I was finally referred to a new mental health nurse.
And for me, they were even worse.
Forced into a corner, I asked for a psychological assessment. I wanted them to tell me what was going on, was this generalised anxiety and depression or was it something more, as I suspected. That appointment was heartbreaking, mostly because they immediately approached my case as just another statistic. Even when I asked about the possibility of EUPD (also known as BPD, Borderline Personality Disorder), they said I was “slightly borderline, but nothing more”.
I walked out of that room and into four extremely difficult years, ones where, at times, I didn’t think I would survive. Not only was I a danger to myself, but I was damaging my relationship too; my partner couldn’t handle how unpredictable I was. Luckily, we made it through, and even decided to buy a home together, however, a lot of damage had been done during this time.
“When I initially went in 2019, I was completely dismissed.” Shares Eleanor Noyce, a freelance journalist who’s currently seeking diagnosis. “Granted I did bring it up in a mental health appointment allocated to discuss my progression with sertraline, but I felt that I was silenced in the name of saving time and/or money. I returned to the doctors in 2021 as I realised that the problem was not going to go away, and I’d been suffering for years.”
Her story is similar to many others, such as Amy, who also experienced a lack of empathy as well as misdiagnosis. “I was wrongly diagnosed in 2013 with bipolar and even though I stressed many times to my GP and psych that I didn’t feel like I fit that diagnosis, I researched a lot of my symptoms and feelings but was never listened to.”
This need for answers is what drives us and is the reason why I soon contacted my new GP after I’d settled into my new home. Similar to both Eleanor and Amy, I went in armed with extensive research into the disorder.
My doctor sat there and listened to my experiences, quickly agreeing that it sounded like I did have EUPD, “I can’t clinically diagnose you, but you sound like you have it”. Those were his words, words that made me feel like I was finally being taken seriously.
When I received the call to arrange my first appointment with the specialist a few weeks later, I was met with startling news: I’d been diagnosed with EUPD four years prior. That “slightly borderline” remark that was treated as insignificant, had meant that I never got told the truth about my mental health.
A new referral now in hand, I went to an appointment at the same mental health hospital which had proven so problematic previously. Inside the enclosed office, I explained my situation. The answer? To question my need for labels; my new nurse insisted that diagnosis often did more harm than good, without actually giving me the chance to make that decision for myself.
It bears a striking similarity to a conversation I had with another person living with BPD, who wishes to only be credited to their online name. When @SchrimpBoy contacted their doctor begging for help, their doctor asked what they were meant to do — the disorder isn’t curable, so knowing what it is won’t change anything.
Although I too voiced my concerns and my need for answers, I kept running into the same hurdles. Even when I mentioned how I’d recently been informed that I was given a diagnosis four years ago, my care coordinator’s response was that it was a lot of paperwork to go through to confirm this. My struggles were a tedious ad hoc task to her, one she wanted to avoid.
Only when I was at my third session with this woman, when I told her that she could either help me or I would go private, did she finally relent. Although I’m grateful that she did change her mind, I regret feeling forced into giving such an ultimatum.
It took two weeks before I heard anything further, but a letter confirming my diagnosis did eventually arrive; there, in black and white, was my validation. The moment I’d been waiting for. I should have felt relieved, and while a part of me did, the other part of me was angry. Nobody should have to go through so much turmoil to get answers for their mental health.
My feelings, based on the experience I have had, is that far too many within the medical profession simply don’t understand mental illness, they can say they empathise but I’ve yet to see much genuine emotion there. For one genuinely invested GP, there’s 10 more who treat you in a clinical manner, which often only exaggerates our self-hating internal monologue. I know this isn’t the universal experience but that doesn’t take detract from the difficulties I, and many others, have faced.
I feel, if mental health services are to improve, better training is needed to ensure that more care is taken when talking to such vulnerable people. Although medical professionals may not mean to appear disinterested, their demeanour can come across otherwise. Such an impact stays with us, we remember it long after they’ve forgotten.
EUPD is far from unknown, so there’s no reasonable excuse as to why it keeps getting overlooked and downplayed. We shouldn’t have to be at crisis point to be taken seriously.
