Terminal Mental Illness

My heart is breaking.

Today I learnt of the death of Claire Greaves, who passed away in late February. She was a mental health activist, a recovery warrior, and the world is a sorrier place for her passing.

I feel as if I have no right to be sad about this, though. I never met her.

Through the mental health community on Instagram, I found Claire. My anxiety prevented me from reaching out to her, as it did to Sophie before BPD took her life too. I have deep regret about that. Perhaps there is nothing I could have done for either of them, but to have shown them that one more stranger saw them. One more stranger cared. One more person found their strength to fight inspiring. Watching their lives unfold through their updates made me root for them. I dreamed that I could know these beautiful souls, but was too terrified to speak to them.

Being on the other side of suicide does not take away your own suicidal thoughts.

Seeing and feeling the effects of losing others does not automatically shock you into recovery.

What it has done is encourage me to reach out to people. To tell people when they give me good vibes, when I love their clothing, when I feel inspired by them.

A moment wondered is a moment lost.

Let the words have their moment.

I love your nails.

That dress is beautiful.

You have such a calming energy.

The worst you can be is weird.

The best you could be is the distraction that puts a smile on their face, takes their mind away from the blackness, and saves their life that day.

 

Stay safe, friends.

There will be a day when you can say you’re okay and you mean it.

Rowan.

The Road to Diagnosis

Hello lovelies.

Over the years, I’ve met a lot of people who have been afraid of taking the first step to go and see the doctor about mental health.

I like to call it brain health.

Your brain is a physical thing. It’s producing these feelings, these behaviours. It’s important to look after your brain, as you would your lungs if you had breathing problems, or your heart if you had chest pains.

People come up with lots of reasons to be afraid of going to the doctor. Some examples I’ve heard are:

“What if they don’t believe me?”

“I don’t want medication, what if they make me take it?”

“It’s not that bad yet. I’m not suicidal so it can wait.”

I’m just going to be brutally honest here.

In recent years, understanding of brain health has lost so much stigma. Don’t get me wrong, the stigma still exists, but if you go to your GP because you can’t sleep, can’t eat, and feel empty/overly emotional all the time, your GP will almost definitely not tell you to “man up” or “just deal with it.” They will not expect you to simply get it together.

And if they do? You can put in a formal complaint to PALS.

It is true that many GPs don’t have a lot of psychiatric experience, particularly older GPs I’ve found. However, they will be able to offer you medication based on your presenting problem (typically first line medications are SSRI antidepressants, like sertraline, fluoxetine, and citalopram).

If you have anxiety, they may offer you beta blockers (such as propranolol) to take when your anxiety is heightened.

Remember though: just because they offer you medication, it does not mean you have to have it! You can refuse treatment unless you are detained under certain sections.

Some counties in the UK have self-referral websites which you can go on and fill out an application for counselling. In other counties, your GP has to refer you.

Also – this is something that a lot of people forget:

It doesn’t matter if you aren’t suicidal.

It doesn’t matter if you are still able to work, or can mask your feelings well to the people around you. It is better to go earlier, before you become suicidal, so that you can get on the waiting list and start learning coping mechanisms as soon as possible. If you found a lump on your body that you thought could be cancer, most people wouldn’t wait until it grows into a giant third head growing out of your shoulder to get it checked out.

If you are younger (under 18) there are confidentiality issues if you go to your GP for things like suicidal behaviour or self-harm. If the doctor thinks you are a risk to yourself they have a legal obligation to involve your parents. For some people, having supportive parents is helpful towards getting early intervention for your mental health.

My experience, however, was that my parents did not believe I was struggling. My grades were good. In their mind, I was acting up. Attention seeking. They couldn’t see anything wrong. As a result, I had to wait until I was 18 to get the help I needed.

In my experience, my GP started me on citalopram and I was referred to a psychotherapist at the practice for help managing depression and anxiety. Psychotherapists are not trained to prescribe medications, but in therapeutic methods to manage your emotions. I was offered six sessions, which is fairly standard for counselling. At the end of those sessions I was referred on to the Community Mental Health Team (CMHT), because I was displaying dissociative and (at the time) psychotic symptoms indicative of a more complex, long-term problem.

A few weeks after my referral, I got an appointment with the CMHT for a month or so later. In my initial assessment they took my history and gathered information about my current brain health situation. They also got me to identify five or six of the main problems I was experiencing at the time.

Next, I was assigned a community psychiatric nurse (CPN). I’ll tell you all about her in another blog post. Anyway, my CPN also referred me to a *cough* useless *cough* psychologist. Said useless psychologist told me that I should consider getting new friends, because a lot of the people I spent time with had mental health problems too, and quite a few of my friends had autism. She asked me why I thought I gravitated to these people, instead of finding more normal friends. Safe to say I refused any more sessions with her after that.

I was 19 around the time I had intervention from the crisis team. I stopped working, I couldn’t cope with the environment. The combination of meds, alcohol, and severe dissociation I experienced at that time means I have little memory of that period in my life. Because of the crisis team, I was bumped up the list to see a psychiatrist. At some point around this time my meds were changed to venlafaxine. A joyous affair. One day I’ll do a post about different medications.

Anyway, that psychiatrist was amazing. She’d seen two of my favourite bands live when she was younger (The Dresden Dolls and Bowling for Soup). She took me seriously. Most importantly, she didn’t tell my to get new friends.

The second time I met her she changed me onto mirtazapine (WONDER DRUG …besides the weight gain). My useless CPN left and I was switched to one of the most wonderful nurses I’ve ever met. He did DBT and distress tolerance with me and it honestly changed my life. I had a final appointment with the psychiatrist and she told me I was too young (around 20 at this time) for her to diagnose me with BPD because my personality was still going through major changes having just come out of adolescence. She did diagnose me with EUPD traits and social anxiety disorder, though.

Over the past year, that psychiatrist left and I was put on vortioxetine by a different psychiatrist (who had never met me before and seemed like she was a representative from Brintellix come to sell me vortioxetine.) My CPN changed twice more, and I went back to see a different (far more impartial and professional) psychologist.

Following some major nausea from the vortioxetine, I had one more appointment with a DIFFERENT psychiatrist, who had actually read all my notes (which is insane – at this point I’ve been there about three years). He put me onto sertraline because of my PTSD, and finally diagnosed me with emotionally unstable personality disorder.

He understood that not all people with BPD explode.

Some of us implode.

And that’s where I’m at now.

I’m sorry this was a long post… If there’s anything you should take from this, it’s that the road to diagnosis is a long one. You will meet shitty mental health “professionals” who make your life harder at times, but once you find a therapist who engages with you and works with you, therapy will get easier.

Also, I understand that not everyone wants a diagnosis. Some people don’t find labels helpful, and that’s okay. For me, the diagnosis named the illness. It’s like the story of Rumplestiltskin – once she named him, she defeated him. Yeah, brain health is not that simple, but if I know what I’m dealing with, it’s easier for me to understand and compartmentalise it.

Personally, therapy felt like it was an antibiotic sent to kill off my identity. I’d been ill for so long I was my illness.

The biggest thing I’ve learnt these past few years is that there’s a person inside me. There’s a person beyond borderline personality disorder. And there is a person inside you too. I promise.

 

Thanks so much for reading!

Until next time,

Rowan.

‘But you don’t look disabled!’

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Okay. Here’s the thing.

 

I’m disabled.

 

I do not have cerebral palsy, or multiple sclerosis. I am not in a wheelchair, nor do I need an assistance dog.

 

That does not mean I’m not disabled.

 

Unfortunately, many people do not understand that not all disabilities can be seen. Some people have invisible disabilities.

 

Initially, in 2016, I was diagnosed with social anxiety disorder. This diagnosis allowed me to get access to disabled student allowance at uni. I could have extended deadlines, library loan extensions due to my decreased concentration, and a specialist mentor to support me through my studies

 

The next year, I was told I had recurrent depressive disorder. Both of these diagnoses were correct. There’s no denying I’m a depressed hermit with an intense fear of new people and authority figures. I knew there was something more, though. Flashbacks, volatile emotions, and an intense fear of abandonment were coming from somewhere, and it wasn’t the depression or anxiety.

 

Finally, in 2018, I was diagnosed with what I’d known I had all along:

Emotionally unstable personality disorder (EUPD) and post-traumatic stress disorder (PTSD).

 

For those of you who don’t know, borderline personality disorder was renamed as emotionally unstable personality disorder in recent years. The ICD-10 (a book on diagnosing mental and behavioural disorders) states that emotionally unstable personality disorder falls into two types: impulsive, and borderline. I am the borderline type.

 

Though you can’t see my emotional dysregulation, my flashbacks, or when I’m dissociating, these symptoms are as valid as any other disability.

 

Until next time!

Rowan.

The Personality Disorder Playlist

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To give you guys a bit more insight into the kind of music I’m into, I figured I’d put together a playlist of songs that describe my experience of certain aspects of living with a PD. Some emo bangers, some folk-type stuff. There’s a potential trigger warning on all of these songs, of course, because even though they’re not all inherently sad there may be themes of self injury.

 

1. A Life Less Ordinary – Motion City Soundtrack

“I like to tell you that I’m ready for whatever’s coming, but to be honest there’s a part of me that loses control.”

Taken from their 2010 album, My Dinosaur Life, this pop-punk classic has themes of relapse, recovery, and hope. It’s an honest look at coming back from a terrible place, and although outwardly you may look recovered, inside there is still that part of you that loses control.

 

2. Þerney (One Thing) – Pascal Pinon

“One thing. It only takes that one thing. One thing, and everything is torn and ripped.”

One Thing describes my experience of living with emotional instability. For me, it can be the smallest thing. No response to a text. Saying goodbye to my partner, but no hug. What would be minuscule to a neurotypical person stings far more because my of PD. I’ve seen people with BPD often described as though we’re missing a layer of skin, so everything touches the bare nerve. An emotional burn victim, if you will, with my sensitivity turned all the way up.

 

3. Agape – Bear’s Den

Even though your words hurt the most, I still wanna hear them every day.

Yes, I know agape means a kind of ‘godly love’. No, I do not believe in a god. However, I do feel that the underlying emotion of this song links to what it’s like to have a favourite person. If you haven’t heard of what a favourite person is before, Juliette Virzi wrote an excellent article detailing how an FP differs from a best friend. This is how I feel about my favourite person, although I had to cut off contact with them in the end because they were like an addiction.

 

4. Bad Habit – The Dresden Dolls (TW: self-harm)

Even if I quit, there’s not a chance in hell I’d stop.

Amanda Palmer is my queen. Bad Habit was one of the first Dresden Dolls songs I heard, and I was captivated. Though I have read/heard in interviews that this song is actually about nail biting, it bears an awful lot of similarities in how I feel about self-harm, which has been a part of my life for the past eight years.

 

5. Cry for Judas – The Mountain Goats

Some things you do just to see how bad they make you feel.

This is a song I haven’t known for long, so it doesn’t carry as much of a story to it as the others. You know when you’ve known a song for a while and the moment you hear it, it forces a memory into your brain-eyeballs? Yeah, there are a couple of those in this list. Anyway, as soon as I heard this, the opening line encapsulated why I did certain behaviours when I was young(er) and stupid(er).

 

6. Self Esteem – AJJ

This place has taken all my self esteem.

My angsty song. For when I’m scared, and angry, and need to get out of a place.

 

7. I Miss Those Days – Bleachers

I know I was lost, but I miss those days.

This is a song that makes me nostalgic for the days before meds and therapy. Before I had dialectical behaviour therapy (DBT), I was a complete mess. Don’t get me wrong, I’m still a mess, but it’s more manageable now. Before DBT it was as if I was trying to clean up 6 pints of spilt milk with a single bog roll. Now I have that super-absorbent, fancy ‘One sheet does Plenty’ kitchen roll. I haven’t quite reached the level of having a mop yet but I’m getting there. Anyway, this song makes me nostalgic for the full spectrum of human emotion I had before I started medication. As much as I feel my moods are stunted now, it does mean my impulsive behaviours and suicidal tendencies have lessened because I’m not feeling the depression so harshly.

 

8. Plain Sailing Weather – Frank Turner

The problem with showing your lover your scars is that everybody’s lover is covered in scars.

Plain Sailing Weather is one of those songs that forces a memory into my head. I don’t want it to be there, but it’s dancing across my retinas even though I’m years away from it. Still, the opening line rings true: Give me one fine day of plain sailing weather and I can fuck up anything. I do feel like a chronic fuck-up. Logically, I have to practice being kind to myself, but my default settings are on self-destruct. Therapy has helped somewhat, however I don’t think I will ever be cured. Treated. Managed. But not cured.

 

9. Unwell – Matchbox Twenty

Stay a while and maybe then you’ll see a different side of me.

Sometimes I’ll remember the days when people called me psycho, or paranoid. Finding this song gave me something to sing loudly (either in my head or out loud) to drown out the memories of those idiots. I’m not crazy. I’m unwell.

 

10. Misery – Creeper

If you could see the wreck I am these days, you’d have new reasons to stay away.

This is the most recent addition to my list of BPD songs. It resonates with my little emo self from eight years ago when I started showing symptoms of having BPD. Obviously they don’t normally diagnose thirteen year olds with personality disorders, because your personality is going through massive changes anyway as you go through puberty. As an adult, this is the song for when I’m wallowing in self pity. This is my ‘I am completely fucking worthless but I need you’ song. Just hold my hand for a little while. Misery never goes out of style.

 

If you’ve read until the end, thank you! I do appreciate that. Hopefully you’ve found some new music to add to your own playlists, or you’ve found bands to steer clear of for the rest of eternity. Either of those is fine!

 

Until next time!

Rowan