Disability Awareness

Did you know that July 14 is Disability Awareness Day? I didn't, until I stumbled onto The Glossary Project.

Now, many of you already know I live with mental illness, but did you know that these debilitate me to the extent of a disability? You probably wouldn't if you met me on the street-- you might think I was shy, or that I seemed a bit awkward, but most likely you'd just see me as a friendly girl. But don't worry, even the workers other than my personal helper & mentor at Open Minds, a service I use to help me live around my illnesses, find it hard to remember, so I don't expect a stranger on the street to know.

The truth is, I have a list of diagnoses almost as long as my arm, and there is a lot of interplay between them, but they are all affect me separately as well. For the purposes of this journal, however, I'm going to focus on a mixture of depression, anxiety and Borderline Personality Disorder - four of the diagnoses I've been given that have had the most impact on my ability to live "a life worth living". (If you're looking at me in confusion now, I will clarify that I was diagnosed with both generalised anxiety disorder & PTSD, but I have popped them both under "anxiety" for the purposes of this journal. They are however quite different and you would do well to research them separately if you are interested in knowing more of the facts about them.)

It's no secret that BPD goes hand-in-hand with a variety of other conditions, and that those can often confuse the issue or lead to misdiagnosis. In my case, because I had already been diagnosed with BPD, I had trouble accessing treatment for the depression & anxiety I suffered. Interestingly, when I finally got someone to listen and was prescribed effective medication for the MDD & GAD, management of my BPD symptoms became not just easier, but they became something I actually could do, and that's when things finally started turning around for me.

Before I go on to tell a bit more of my story, I'd like to tell you about Borderline Personality Disorder. I've chosen this one as the focus here because I have done the most research & treatment on this one, and also because I think it's widely misunderstood in both the regular community and the psychiatric community.

Borderline Personality Disorder (sometimes known by other names such as Emotion Regulation Disorder) is one of several personality disorders, and in the DSM IV there are 9 separate criteria of which a person needs only to meet 5 -- this means there are literally hundreds of ways that BPD can present in varying degrees of severity & impairment, yet there is one "universal" view that people with BPD are selfish, manipulative and prone to violent outbursts. In the psychiatric community, those with BPD are seen as all of the above and also often viewed as "unhelpable" or "unwilling to help themselves".

Now, bear in mind that information I gave you earlier about how many different ways BPD can present, and you'll hopefully notice a big problem: that "universal view" includes 4 points -- even if every one of those was a separate diagnostic criteria (they're not), that would mean there is the chance that there are people out there who meet one or even NONE of those pointers. And this is without taking into account any comorbid conditions the person may have.

I won't tell you what people with BPD are or aren't, beyond telling you that they're just that -- they're people. They come in a variety of colours, shapes, sizes and mindsets, and they don't fit into a box just because you want them to.

MY STORY

I had a rough childhood and my mother says she tried to get me psychiatric help when I was only 3 years old, but it didn't pan out. I'll gloss over the childhood years of struggle because I mostly don't remember them (thankfully), but I do remember that I worsened in my teen years and got caught out with my self harm. This lead to a psychiatrist, who was ultimately unhelpful but did diagnose me with MDD and GAD. At the time I couldn't swallow tablets, so my only option was liquid prozac, and it didn't do much so I simply stopped taking it. I grew up, I moved out and by the time I got married at 19, I was able to take pills with difficulty, so my doctor (at 18, I stopped seeing the psychiatrist) prescribed an antidepressant. I tried a few, they didn't help. Life went on, and I gradually recovered memories of my childhood that were not at all pleasant. I pushed it aside and worked on building a life.

I took on a job in childcare and found that I loved it once I was comfortable. I made friends, I felt like I was making a difference and I just plain had FUN at work. My husband and I started trying for a baby and after a year and a half, we were finally blessed with a pregnancy. Unfortunately, it was very short-lived. I miscarried and a week later, my husband told me he had spent the previous years lying to me -- he didn't want children, he was glad our baby hadn't lived, and he wanted a divorce.

My world exploded in one fell swoop, and that's when my mental health really deteriorated. I went to work, but I was incapacitated by grief. I cried all the time, I was extremely suicidal and I went back to self harm that quickly got out of hand. I continued for a couple of years, just trying to hold it together, but the grief and the pain didn't abate and I was finding more inventive ways to hurt myself & taking more and more overdoses. Eventually I was hospitalised and that's where they diagnosed me as having BPD and PTSD.

At the time, they also gave me an antidepressant which actually stabilised me, but stopped working after 6 months, by which time I was in someone else's care. Eventually, my medications were taken from me as the doctor said "if you were really depressed or anxious, the medication would be working. You have BPD and we can't treat that with medicine." That was a monumentally bad idea and my depression & anxiety worsened (wow, who is surprised there?) over the next few months.

I went on holidays overseas and it was both the best and worst thing for me at the time; mostly the best, though, so I'm going with that.

When I came back, my GP put me on a new antidepressant and lo & behold, those symptoms gradually improved; still, unfortunately, not to a manageable level, but better; and I began to see my BPD symptoms more fully.

When I wasn't buried under depression, I did have moods that rose or dropped in connection to the world around me. Even when I wasn't buried under depression, I did have low self esteem & terror of abandonment. Even when I wasn't having panic attacks & crazy-anxiety, I did have abnormal fears that I could actually choose to overcome with hard work.

I saw that the dissociation wasn't necessarily always due to the related conditions, and that the paranoia & mild psychosis I experienced weren't always just part of depression -- those things were part of what it meant for me to have BPD.

Without the shroud of depression and anxiety that I had lived under for most of my life, I was able to see that BPD had a really strong hold on me, and I was able to see ways I might begin to break it. I worked on my relationship skills, I worked on my self esteem, and I worked like hell on my coping skills.

It took years, several medication changes and a personal relocation (to free myself from abuse) before things properly began to turn around, but they have. I was never unhelpable, or unwilling to help myself - I just needed my treatment to be suited to ME and not to this universal view of someone with BPD.

One thing I've learnt, though, is that no matter how far I've come, the interplay between my diagnoses is important to remember. If depression takes hold, my BPD, too, rears its ugly head. If I allow my BPD symptoms to run rampant, my depression & anxiety will begin to creep back to higher levels; and the same goes for my other conditions unlisted here. They all play a part in leaving me disabled to a varying degree.

And make no mistake about that -- it's invisible, and I've come a long way, but I am still disabled. There are still times I can't do much more than get out of bed because everything is just too overwhelming. I had to quit my job and I miss working, but I accept that I'm not a place to do that at the moment. Even on a good day, if other people are involved, I struggle to make what should be an easy decision such as what to do for the day. My anxiety still keeps me from things I otherwise want to do, and there are still times my fears of abandonment lead me to act in ways that (when I'm rational I can see) won't work. I can talk to people, and I can even sometimes look them in the face... but you won't see that as soon as you walk away, I will replay everything I said & obsess over whether I may have inadvertently upset or offended you with something I have said -- even though all we talked about was how nice the weather was today.

I have a disability, an invisible one; and I have some misunderstood & stigmatised disorders; but don't let that stop you from seeing me or anyone else as a person, because that's what we all are, first and foremost.

Any great work of art... revives and readapts time and space, and the measure of its success is the extent to which it makes you an inhabitant of that world - the extent to which it invites you in and lets you breathe its strange, special air.

~Leonard Bernstein, What Makes Opera Grand?