After 13 Years I Finally Have a Care Plan!

By Jody Elford

After years, maybe thirteen or so years, last week I received a letter in the post from the NHS First Response Team. It contained not only a diagnosis, but a plan.

The Holy Grail

It’s the holy grail of mental illness, to receive an actual care plan from an actual clinician. It’s so strange that mental health is weirdly cloak-and-dagger when it comes to providing actual formal diagnoses.

Can you imagine your doctor instructing you to take medication that you knew had something to do with your blood sugar?

Then never receiving the formal diagnosis of diabetes?

How would you react if your doctor prescribed mystery pills to address your symptoms, but only gave vague and furry responses when you asked what was actually wrong with you?

I don’t know about you, but it would piss me right off.

Negative responses

Even within the mental health peer support community, the response I received for pursuing a diagnosis was overwhelmingly negative.

I found myself attacked on a self-injury peer support forum a few years ago. It was when I made a post in which I lamented over having no formal diagnosis and feeling like I was drifting vaguely towards nowhere in particular. I explained how I felt lost and confused. Also I stated how I felt at the mercy of my moods and thoughts. I added that I could offer no explanation for this, or attribute it to any cause whatsoever.

Even on that forum, the membership of which comprised entirely of people just like me who were struggling with self-harm and mental illness, the response I got was overwhelmingly negative.

They accused me of wishing I was ill, wanting attention, of pathologising myself. They said I wanted to feel ‘special’.

Like, yeah, wanting to hurt myself or die all the time feels really fun and special.

Bonkers

I’m consistently surprised and, to be honest, disappointed at how frequently this idea is tossed around.

In literally every other area of medicine, we see formal diagnoses and subsequent targeted treatment as the goal.

We see it as the clinician’s job to explain our condition. We expect them to:

• Identify the problem
• Help you understand what it means for you
• Do whatever they can to alleviate the symptoms or cure the ailment

Were our ophthalmologists or paediatricians to behave otherwise, we would consider it wrong. Simply conducting tests and investigations without explaining why, or prescribing medications while keeping their roles vague, would be unheard of. Not actually pinpointing an official diagnosis or even alluding to what they suspect could be causing the problem would be inexcusable.

We’d go bonkers.

Well. More bonkers.

Bonkers-er.

Labels can be empowering

In a society that champions the idea that labels are dehumanising and negative, we have become fearful of actually pinning down things like mental illness. It’s as though people think giving their problems a name will make the issue somehow more powerful.

Since when was giving something a name, a label, an identifier, disempowering? I reject that idea, and I suggest that labels can be empowering and helpful.

Look at sexuality and gender. People the world over are developing their unique sense of identity using labels and pronouns. The words someone chooses to describe themselves and identify themselves to the world are important to them. A lot of power lies there.

There’s a reason so many of us refer to ourselves as ‘queer’. It’s a reclamation of our power. Empowering ourselves with labels implies a sense of control over one’s identity and direction in the world. I almost wrote destiny but it’s just too cheesy.

When you’re part of an ‘us’, and your uniqueness is suddenly validated and explained, it re-frames everything.

Why is a diagnosis any different?

Why am I selfish or attention-seeking or a snowflake for demanding to know what it is that makes me tick…or fail to tick?

And why are we, as a society, so averse to the idea that mental illnesses are actual proper illnesses that can be categorised, compartmentalised and managed just like any illness?

Even just last night I told Dave (with no small degree of wonder, because personally I think it’s brilliant) that a chronic, life-affecting mental illness can be registered as a disability. I explained this deservedly affords the sufferer the same rights to reasonable adjustments and equal opportunities as a wheelchair user.

To be honest, it had been news to me when I’d been told this, and I thought it was a triumphant victory for mental health.

His first thought, though was, ‘Yeah, but you want to be careful’.

Careful of what, exactly?

I completely understand where this reticence comes from. Obviously. I mean it’s not like registering ourselves as disabled is something everyone should be doing – but, careful?

Careful of what, exactly?

He went on to explain that the DVLA might take away your licence (actually, they can’t if your disability doesn’t affect your ability to drive). Also he added that a disability can affect your opportunities in the workplace. (This is, in fact, safeguarded against by law.)

He went on and on, and so forth.

With this kind of irrational and foundless fear striking into the hearts of sensible people everywhere, it’s no wonder the stigma surrounding mental illness lingers.

Your brain is an organ

Your brain is an organ. It can malfunction just like your stomach, joints or immune system, and when it does, you get sick. And just as with various other kinds of illness, often mental illnesses present in patterns and meet criteria that make them diagnosable. This makes them simpler to categorise, to broadly group, and easier to understand and access targeted support for.

How is this anything but a useful thing?

After a particularly distressing therapy session some weeks ago, I sat in my car and began to cry. The session had taken a turn that had made me shut down, and despite my efforts to be honest, I failed to impress on the therapist how serious my suicidal ideation and self-damaging impulses were at that moment.

One of the nutty things that happens to me is having frequent episodes of intense but short-lived crisis. This means I often experience explosive episodes of being in crisis. Traumatic events, stress, or sometimes pretty inane things that bring about a disproportionate response can trigger this.

An internal switch flips

It’s sort of like the flipping of one of my internal switches, only this switch in particular trips when it really shouldn’t. Like perhaps I can’t find something or someone trolls my instagram. When I experience what I perceive as a rejection or abandonment, my brain throws this wild hissy fit in a diva tantrum of Beyonce proportions.

It’s all very dramatic and from the outside it probably seems sort of silly. As someone not renowned for being dramatic or unreasonable, it is pretty weird to see me flare up so astronomically over things that are pretty small, all things considered.

Until relatively recently, I was always able to hide this side of myself. However, since my breakdown in August, my reserves have just been too depleted and the illness has shown itself.

I was sitting in my car, and although nothing had really happened, exactly, that switch had gone. For one reason or another, I found myself presently in crisis whereas that very morning I had been fairly stable, although very depressed.

I Spilled the Beans

It can be pretty scary when your brain decides that actually, it hates you and wants to kill you. It’s an extremely peculiar experience, to dip into episodic suicidality so frequently and with such ease. It can make you exhibit some funny (yeah, fucking hilarious) behaviour.

Luckily I managed to call my GP surgery. In a blubbering conversation with the beautiful receptionist (seriously she’s amazingly kind and gorgeous I think I love her) she arranged an emergency appointment for me.

Within the hour my partner had left work to be with me at the doctor’s office. Just per chance I saw a GP who is not only incredibly empathetic and patient, she is proactive and helpful in figuring out what I need. She spent at least half an hour with me, handing me the occasional tissue and reminding me to breathe every now and again. All this while I spilled the beans.

I needed professional help

I had never outright confessed to a doctor that I sometimes feel like I’d be better off dead. However, being (finally) exhausted with it all and simply unable to deal with it anymore, I let it fall from my lips. Then I explained that although I experience suicidal thoughts frequently (and always have), that presently they seemed more serious and frightening.

I explained that I was trying my best but didn’t feel sure I could go on much longer and that I suspected something was wrong with me. Also, I mentioned that I’d been engaging with every treatment sent my way and nothing seemed to have made a difference.

Then I added that I felt something more intrinsically ‘wrong’, a mis-wiring inside my brain or a facet of my actual personality, was to blame. That I needed professional help and that just being on medications and talk therapy was not enough.

Have these pills…

It’s all too often people are not heard by mental health services. People the world over beg for help with their illnesses and get uneven or unproductive responses. This is either because resources are so thinly spread, mental illness misunderstood, or their needs not correctly identified.

I have not been a stranger to GPs who underestimate how serious mental health issues can be. I’ve been told I’ll grow out of self-harm, and told it’s probably just hormones.

I was given a sort-of-kind-of-almost (mis)diagnosis of Seasonal Affective Disorder that led to me chomping down vitamin D tabs every autumn to spring. This despite it making no difference at all.

I’ve been discharged from A&E after an overdose without being so much as asked if I intended on doing it again.

Also, I’ve suffered the NHS waiting times for talk therapy along with everyone else.

What I’m saying is, it happens.

We’ve all experienced the non-conclusive GP visit, right?

The one we spend ages psyching ourselves up for because we want to try to be brutally honest. Possibly at the risk of hospitalisation. Then in the end the doctor is like, ‘Eh. Have these pills. Go to A&E if it gets worse’.

She heard me

This time, it was different.

I got lucky. I saw the right people, also I called on the right day, and I caught clinicians in the right mood. Also, I behaved in a way that was concerning enough that shit happened.

When the system works, it really works. In a matter of two short weeks I received a letter from the First Response Team, inviting me along for an assessment.

The social worker assigned to my case is kind and easy to talk to. She performed a detailed assessment that took two hours, listening to me without interruption, and I felt heard.

Not just assessed, and not just listened to. Not just a number.

She heard me.

A lightbulb moment

‘Have you ever heard of something called EUPD?’ she finally asked me, an hour and a half in. I nodded slowly, trying not to show the palpable relief I felt at hearing her say it. At hearing someone else, someone objective, someone professional, confirm that my suspicions about having a personality disorder were not unfounded or foolish.

‘I have, actually’, I responded. ‘Yeah. I know someone who has it, and I did learn about it ages ago when I read Girl, Interrupted. I just never, until now, considered how I might meet so many of the criteria.’

It was – as the saying goes – a lightbulb moment.

‘Yes’, she agreed. “You certainly do ‘fit the bill’, as it were. I’m not a clinician but I would say there are strong indications, in my experience, of something like that.’

She went on to explain how she was to produce a detailed report that very afternoon. After this report had been discussed in a multi-disciplinary team meeting, an outcome letter would follow.

A milestone in my recovery

That outcome letter confirmed our suspicions of a BPD diagnosis being the most likely fit. It went on to state that my GP should continue enforcing a closely monitored, phased return to work while I await a DBT group and an appointment with an Occupational Therapist.

They took a look at the medications I take and agreed they were all appropriate and that no changes needed to be made. What most impressed me was that every single important discussion point that came up in my assessment was touched on and accounted for in the outcome report.

Like I said, I had been heard.

It’s a mixed but incredible feeling. To have a sense of a milestone in my recovery.

Although sort of stressful and overwhelming, it is also great to begin tentatively looking ahead to a time when I will have my symptoms more effectively managed.

Reproduced with permission, originally posted on mentalbabble

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