Friday, June 6, 2014

Relapse and advice

First off, a trigger warning. I talk openly about self harm and disordered eating.

It is a well known fact that relapse is a part of recovery, as much as those in recovery hate to admit it (or at least I certainly do). Relapse means something different for every illness, and for each individual. Often though, the common theme is returning to those self destructive coping mechanisms we've tried so hard to change. This can mean staying in bed all day, pulling hair out, scratching, cutting, burning, binging, purging, restricting, over-eating, reckless behaviour... anything we've used to cope that is ultimately harmful that became habit.

I think of relapse like a horror movie that you've seen a million times. You know what's going to happen. You cringe as you watch the characters do the same thing over and over again with the same result: they die in some horribly gruesome fashion. They make the same stupid mistake over and over again. You are helpless to stop it from happening.

This is perhaps a very negative view of relapse. It implies that you are a helpless victim to your illness, and that there is not point trying because you're just going to hit the same point over and over again.

I'd like to emphasise that I don't believe either of those things. But I find it increasingly frustrating the more I see people giving advice to those going through relapse, reassuring them with the same clichés; relapse is normal, it's a part of recovery, you just have to get through it, it'll get easier every time etc. etc. It's just as annoying to me as people who say "it's okay to not be okay". I especially detest this kind of advice when it comes from people who know me well, and/or have had their own struggles with mental illness. Are you kidding me? 

I understand that people don't know what to say most of the time, and there's a great deal of fear of saying the wrong thing. But those who know me well know that I've been dealing with this for years. I've seen plenty of different counsellors and psychologists and psychiatrists. I've read hundreds of articles and blog posts. I've heard it all. Every buzzword. It is not helpful to continuously use the same words/phrases for each individual if you want them to actually listen to you. I'm not saying there isn't very obviously well researched and studied ways of treating illnesses; I'm saying that when you are dealing with someone one on one, try to avoid the buzzwords and clichés. It reduces the person to a statistic. To a number. To one of many. 

It's more difficult certainly with a stranger on the internet, but all you really need to do is listen to the person to get a good idea of their individual struggle, and to then tailor your response. If it's someone you know well, remember that they probably think you're really tired of hearing about their problems and they are just waiting for the same responses. Whether you've been kind to them in these situations, or kind of a jerk, they'll notice if you rehash the same advice you've given before. Perhaps they do need to be reminded of the same thing. It's still insulting when you use exactly the same language, exactly the same phrases, for a different situation, and as someone who is supposed to know them well.

Be patient. Let them explain. Notice what's different this time. Think about the phrases you use and whether or not they are actually helpful or just something you think you're supposed to say. Every person going through relapse is experiencing things differently, and every time they relapse is different. So it should be treated that way.

On a more personal note, I am going through a relapse.

For me this means isolating, binge eating junk food, making myself throw up, spending too much money on things I don't need, cutting myself and not caring about putting myself into situations I know will ultimately make me feel worse. I watch myself doing this and feel incredulous at my own stupidity. Why would I go back to these habits when I know how harmful they are?

The problem really isn't knowing that they're harmful. Habits are hard to break. Self destructive coping mechanisms are very hard to break. It's not something you can think away. Certainly knowing is part of it, but ultimately that's not what's helpful. Getting into good habits and good coping skills is what helps. It's slow, and fucking painful, and you're going to trip and fall on your arse repeatedly. It's more than a little fucking annoying. 

But falling on your arse again doesn't negate everything else awesome that you've achieved since you started. Falling on my arse doesn't negate every awesome thing I've achieved since I started. It can feel that way, but it's not remotely accurate.

What I can't do at the moment is talk about it. I've actually found that I'm getting worse at admitting that I'm not well. I just imagine people get tired of it. I get easily upset when people ignore me or stop talking to me or stop asking to hang out and feel it's easier to just be fun and happy so that people will want to talk to me and spend time with me. When someone comes along who's really supportive and kind, I cling to that person and go to them every time something goes wrong and then end up feeling horrible for constantly being a burden and only ever being negative. I'm not really sure what to do about that to be honest.

A person's illness morphs and changes over time, and some good habits get lost because it just seems to become more trouble than it's worth.

Ultimately, everyone is going through something different, and everyone deserves to be treated as an individual.

Thursday, January 30, 2014

The pluses and minuses of finding others that share your diagnosis

When BPD was suggested to me, the first thing I felt was alone. I didn't know anyone else with the same diagnosis. I knew other people with anxiety and depression (ie pretty much all of my friends), but not BPD. Upon researching some statistics, about 2% of the Australian population are diagnosed with BPD, which equates to about 440,000 people. Considering that the population of Australia is about 23 million, that's not actually a huge number.

The second thing I felt was scared. From what little I knew of BPD, it was a diagnosis that tended to mean a huge amount of discrimination, both within and without mental health services. I had a stigma attached to BPD already; I was actually a crazy person now.

When I accessed a service created as a midway point between hospital and home, I met someone else who had the same diagnosis, and I was relieved. Finally, I wasn't alone. Finally someone who could understand what I was going through. I could say things to her that would normally scare other people. I felt a strong attachment grow.

Over time I started to realise that it wasn't entirely a good thing. To start with, my attachment was so strong that I was constantly worried. I felt everything they felt. I went up and down with them. I was very emotionally invested in this person. I wanted them to look after me and understand me and accept me and not leave. I had begun to imitate them, base my identity around them.

But of course, they left.

BPD has a very high rate of ED presentations, due to the severity amongst a majority of sufferers of suicidal ideation and self harm. The friend I made went back to hospital, and I was on my own.

I was furious. How could they do this to me? How could they leave me? How would I ever cope now without them? I was also incredibly upset, knowing that they themselves had decided they needed to return to hospital. I was worried. I was anxious thinking about how she would be treated in hospital. I missed them so much it hurt.

I look back on that moment now and realise how dangerous it was for me getting so attached. I was so overwhelmed that my only thought was making the pain physical so I could fix it.

I self harmed because she left.

Since that time, I have spoken to other people who have/have had a BPD diagnosis, and have been very wary of getting too close to them. I'm aware that my need to find someone who will be able to accept me completely and entirely because they themselves have experienced the same thing is actually dangerous. While that acceptance and understanding is good, the severe emotional attachment and investment that I place on that relationship becomes all encompassing and it can make or break me far too easily.

It's nice to find someone who understands, but I have to tread with caution.

Rubyetc is a wonderful artist who has had a diagnosis of BPD and illustrates her mind workings for the rest of us. Sometimes funny, sometimes sad, she is brilliant, and I'm glad I found her art.

Saturday, January 18, 2014

Why a diagnosis can work against you

Mental illness has always been a stigmatised part of humanity. Ignorance, misunderstanding, bad representation in media... there are plenty of things making things worse for those of us battling a demon in our own minds.

But there are certain disorders that make life even more difficult than others. BPD is one of them.

The stereotype sees those with BPD as manipulative, attention seeking, unstable, unpredictable, overly emotional and impulsive. They always throw tantrums, have crazy mood swings, love you one second and hate you the next. You have to walk on eggshells around them just in case you upset them and they fly off the handle. They can't have stable relationships. They are self destructive, but of course only so someone will pay attention to them.

It's a whole pile of bullcrap.

While some people with BPD exist within the stereotype, the scope of the way in which BPD can be exhibited is quite large when you realise you only need to meet 5 out of 9 criteria. Any illness will not look the same person to person. Similarities occur, but stereotypes can be harmful, and they certainly are for BPD.

In the DSM V, Personality disorders fall under Axis 2. This is meant to differentiate them from other disorders, like mood and psychotic disorders. But what it does, unfortunately, is put you in a box where the immediate response to asking for help is to fend you off and not to give you attention, because you are likely being manipulative, impulsive and attention seeking.

I've been asking for help lately. I've been fighting tooth and nail to get it and I'm being fended off. The last time I asked for the same help, people were happy to make things work so I could get the help. Now that I'm Axis 2, I'm being pushed away.

If you're sick, and you ask for help, you should be given it. That should be how it works. When people don't believe you, you start to doubt your own sanity and ability to recognise when you're unwell. I'm already someone who constantly second guesses their own feelings and thoughts, but now... now it's like I'm standing with a bleeding arm and being told that I'm not really hurt and just looking for attention or being manipulative.

SO THE FUCK WHAT?!?! This behaviour happens for a reason! A need is not being met, disordered behaviour patterns have been created over time, and then people wonder why someone thinks that the best way for people to notice them is to lash out or self destruct or whatever else. That's the thing about a disorder. It's fucking disordered.

I'm so angry and hurt and paranoid and tired and scared and I don't even trust my own mind anymore.

:(

Sunday, January 12, 2014

Triggers

Quite often with mental illness, but especially so with BPD, we talk about "triggers". These are things, whether sights, sounds, smells, experiences etc., that will cause a severe emotional reaction that may lead to a relapse in illness, or an episode of self harm/self destructive behaviour.

Triggers can be very easy to identify, or extremely difficult. Sometimes it's very difficult to know what can trigger you if it has never happened before, and sometimes things that have triggered you before won't do so again. It's a fun game as you can see.

I've always had trouble defining my triggers. I know of a few definite ones, like seeing pictures of self harm, that I work actively to avoid. But pinning down my triggers is definitely an ongoing and ever changing part of my illness.

One very powerful trigger for me is moving house. Since moving out of home 7 years ago I have moved house 6 times. The reasons I've had to move house have often been because an individual has caused me significant distress and I have to move to get away from that person. Even without the stressful circumstances, moving house is stressful for even the healthiest of people. It's right up there with a relationship breakup or losing a loved one. But for someone suffering from a mental illness, it becomes a very dangerous time in which that person can slip back into crisis.

Having a place to call home is extremely important to me, as I imagine it is for most people. I need to have a safe place where I am accepted and welcome. I need a space that is mine.

Having a roof over your head is not the same as having a home. While shelter is obviously an essential, having a home just makes the rest of life easier. Somewhere that we can go back to that is safe and welcoming when everything else is falling to pieces. It is a foundation, a pillar that helps keep us upright.

Losing that pillar... well for me, it throws everything into chaos.

My head starts to move in several directions at once. Instead of having a few fairly clear paths, suddenly I'm faced with a cacophony of options and I just can't seem to focus on anything. I feel weightless as if drowning in my own terror. I start to have moments where I will simply stop functioning because my brain is so overloaded. In these moments people can try and interact with me and I will honestly not be able to respond. My emotions become heightened and erratic. I struggle not to let these emotions hurt others, or myself.

The issue of course is that I need to focus. Moving house means packing and organising and tidying and coordinating... so I muster up all my strength and push all the hurt and rage and fear aside and power myself through. It's fairly common for everyone to do this when they need to get through something tough.

Once it's over... I fall apart.

This is the danger point.

I recognise it now and do my best not to allow it to swallow me, but it's very hard without any energy left to lift myself up.

I get overwhelmed with the need to self destruct. Left with just myself to deal with, all the rage and hurt and fear gets focused inwards and all I want to do is cause myself pain.

It doesn't seem to make much sense, but as someone who absolutely cannot let anyone they care about get hurt, those emotions have to go somewhere, and it's easy when you already hate yourself to just let it turn inwards and hurt you.

I'm not going to pretend that I'm okay. I'm not. I just hope that I can get through this with the minimal amount of damage.

Monday, December 9, 2013

Drugs and BPD

I wanted to talk about psychiatric medication that is only available with a prescription.

My "journey" with mental illness started around the time I entered high school, but I only started to receive treatment from the age of 17, as by this stage things had become fairly critical. This was also the age that I started taking antidepressants.

There are many different forms of antidepressants, but the one I was given, Effexor (venlafexine), is what is known as an SNRI. This stands for Serotonin and Norepinephrine Re-uptake Inhibitor. This differs from SSRI's, which most people have heard of, in that it effects two brain chemicals, not just serotonin.

Effexor is commonly used and has been seen to be quite effective in the treatment of depression and anxiety disorders.

Now I will say that to begin with Effexor worked really well. I'm pretty sure that it helped me to actually finish college and function fairly well for the next few years.

The problem occurred when my dosage was increased after a relationship breakup. 

One thing that is fairly common amongst drugs classified as antidepressants as that they often make the consumer feel a smaller range of emotion. It can be very helpful if you experience crippling lows, but it also means that it's harder to feel "highs" as well. While this effect for me was quite mild for the first few years I was taking Effexor, once my dosage was increased it became much worse.

Now just to note, my experience with Effexor cannot be used to indicate what someone else will experience. Everyone's brain is different, and as such it is very difficult to predict the effects that psychiatric medication will have on an individual.

I began to notice that I struggled to feel any empathy, which was previously very natural for me. When friends talked to me about problems, or I watched or read something upsetting, I would have no emotional reaction to it, where as previously I was emotionally moved very easily.

Unfortunately for me, the numbness became so bad that I began to self harm.

I changed medication twice and have been on my current medication for over a year.

Since my diagnosis (and acceptance) of BPD, it has been more difficult to notice whether or not my medication actually works. It is incredibly frustrating as I commonly get asked this question by health professionals and my answer is always "I don't know." 

Also having been taking antidepressants for 6 years, and especially during the years I was really forming and establishing my identity, I honestly don't know what I am like without them, and I'm not completely convinced that I would be the same person now had I not been on medication this whole time.

I have been lucky however in that the health professionals that I have seen since being first diagnosed were very careful about prescribing medication. Too often I have heard of people having medication basically thrown at them, and people being on so many drugs it honestly scares me, especially psychiatric medications.

I have only very recently been prescribed an antipsychotic (quetiapine). This class of drug is commonly used in patients with bipolar disorder to aid in the treatment of mania, but is also used in psychotic and personality disorders, as they can also experience mania like symptoms, or simply high distress.

I was hesitant to tell people this had happened, but it became difficult to avoid as I had to take it at night, at least an hour before bed, and it makes me quite drowsy (it really helps me sleep). This has had a significant impact on socialising (most of which I do in the evenings). It's also quite a horrible name for a class of drug, as people can immediately jump to the conclusion that you are now actually a crazy person, and to be honest I feel like this too sometimes. It's not uncommon for someone to be on antidepressants. In fact, it's incredibly common. But antipsychotics? Not so much.

It's hard not to feel like I'm officially a crazy person now. While I haven't been messed around medication wise as much as many people I know, this still feels like a step downhill in terms of my illness, and only seems to increase my sense of things getting worse instead of better over the last 18 months (if not longer).

Anyway, I made the decision after being prescribed Seroquel (quetiapine) that I would stop drinking alcohol. Upon reflection I know that I am not good at self control when it comes to alcohol consumption, and that more often than not it would cause me to become very depressed, make unwise decisions that were bad for my mental health, as well as spending money that I really don't have. It's already advised not to drink while on anti depressants, so now that I am also on medication that makes me drowsy at night it just seemed like a good time to make that decision. It is hard, but even after only a couple of weeks I am feeling generally better, and have been able to enjoy social activities without drinking. 

I don't like being medicated, but I am personally better off for it.

Diagnosing Borderline

I was not officially diagnosed with Borderline Personality Disorder until very recently.

The thing that I must emphasise about being diagnosed with any mental health disorder is that it is meant to aid the direction of treatment, not be a constricting box that you can't move outside of, and not a life-sentencing label that will damn you for the rest of your life. The likelihood is that someone with a mental illness will have aspects of more than one illness, and there are some illnesses that are very often concurrent because they feed off each other.

Also a mental illness, unlike a physical illness, is not consistent from person to person. The differences in each individual's brain is enormous, and it's important to remember that the same illness can present differently in those individuals.

Borderline Personality Disorder is diagnosed when a person has shown consistent and repeated behavioural patterns in at least 5 of the following ways:
  1. Frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-mutilating behavior covered in (5).
  2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation. This is called "splitting."
  3. Identity disturbance: markedly and persistently unstable self-image or sense of self.
  4. Impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating). Note: Do not include suicidal or self-mutilating behavior covered in (5).
  5. Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior.
  6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days).
  7. Chronic feelings of emptiness.
  8. Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).
  9. Transient, stress-related paranoid ideation or severe dissociative symptoms.
The fact that only 5 out of the 9 criteria need to be met for diagnosis is very important as it can mean a significant variation in the presentation of BPD in each individual. In fact, there are 256 different variations.

There is a great deal of negative stigma attached to BPD. Here is a website dispelling some of the most dangerous myths about Borderline sufferers.

My first diagnosis from a Clinical Psychologist was Major Depressive Disorder and General Anxiety Disorder. I was 17. For several years this seemed accurate, and medication helped me to retain a sense of functionality.

Last year though things appeared to be getting worse rather than better. Then earlier this year my psychologist said that I should look up BPD and see if I felt that I fit into the criteria, and that we would discuss in the following session how to go about treatment if we both agreed that BPD was a more accurate diagnosis.

After a great deal of research I felt certain that BPD made a great deal more sense than depression and anxiety. After talking to my psychologist, we decided that my treatment needed to move in a different direction to be more effective.

I really struggled once I came to terms with being someone with BPD. I had thought of myself as someone with depression and anxiety for so long, and had become to accustomed to seeing myself that way that I had to change my perception of how my illness affected me. Depression and anxiety symptoms are very common in BPD however, and once I realised this was the case, I started to tell people.

While BPD is relatively common, most people didn't seem to actually know much about it, and honestly to begin with, neither did I. So instead of just saying "So hey I have BPD" I included information on the disorder and types of treatment. I also made sure that I had enough of my own information to dispel any misconceptions people had about the illness, and emphasised the individuality of presentation.

I am now comfortable with my diagnosis, and am not ashamed of it. I answer people's questions with frank honesty and am constantly keeping updated with information on research and treatment. I stand up for my rights with the way that I am treated by professionals and keep my supports close and informed.