So I am just over 2 years into my journey since I was diagnosed with Borderline Personality Disorder. It's been a very, very long road which I might go into at a later date but first of all I want to write here some of the things I have learnt so far about being a BPD sufferer.
1. Some of the most popular books can be more destructive than good.
So like many people when I was first diagnosed, I was recommended some books that are seen as the 'classic' reads for you and your newbie status in diagnosis. Although I have decided not to go into specific titles here, I would highly recommended looking around at reviews before you go ahead and purchase them. I have read some ridiculously out of date books before now, which seem to add to the stigma and distress I felt at the beginning of my diagnosis. I would recommend books which tell it to you in terms which are both easy to understand but also explain the mechanisms behind why this is happening to you. One of my favourites was Borderline Personality Disorder for Dummies. It was clear, up to date and explained to me what the hell was actually going on in my head.
2. Medication is a minefield.. and then there's the NHS.
This is a tad UK specific, but then that's all I know; the NHS are not good at prescribing medication to help you with BPD symptoms. According to the NICE guidelines for BPD medication cannot be prescribed for the symptoms of BPD but only for other co-morbid disorders (such as depression, etc). Firstly, you have to be a very strong willed person to be able to stand up for your own right to say that you're not dealing well with your medications and that you are having side effects. Secondly, you have to fight very hard to be able to convince your GP/Psychiatrist that you are capable of understanding medications and are willing to try them without expecting a miracle. It took me a good 18 months to be allowed to try anything other than SSRI medications. I am now on a tricyclic anti-depressant called Lofepramine which has helped both with my depression and anger. However, I believe that more people should be allowed the freedom to at least try other groups - I, in all honesty, am lucky enough to have a very understanding and well-educated GP.
3. No-one knows what BPD actually is.
One of my biggest bug-bears since being diagnosed with this disorder is the lack of general knowledge about it within the medical and mental health community. I have been referred to a few charities, some of whom didn't know what I had (one of which declared "didn't think I had it"). I have seen many doctors who haven't a clue it exists, and I've seen a lot of 'mental health awareness campaigns' with no mention of BPD in sight. Although figures show that BPD is just as prevalent in the population as Bipolar Disorder, it is far more publicised. One of my aims is to try and work towards changing this, sometime in the near future.
I think the main thing to take from being diagnosed is that you're going to make mistakes, you're going to have to fight but ultimately it's going to be worth it.
If nothing else in these last 2 years I have learnt that progress can be made and my life and voice are worth fighting for, so that's what I'm going to do.
Friday 28 September 2012
Tuesday 10 January 2012
A long time, a long battle.
I haven't posted here for so long, I find it incredibly hard to write about my diagnosis these days especially with what I have been through with the NHS.
I have been waiting for 2 and a half years now for therapy. I have had my psychiatrist quit and not tell me (and also not be replaced). I've had the stigma of BPD thrown in my face over and over again. I've been on countless antidepressants and still I've had no formal help.
I find my diagnosis seems to alienate me more and more from other people, where really it should unite me with the rare few others who understand me.
I wish I could write more, I feel like I may get more out here soon.
I have been waiting for 2 and a half years now for therapy. I have had my psychiatrist quit and not tell me (and also not be replaced). I've had the stigma of BPD thrown in my face over and over again. I've been on countless antidepressants and still I've had no formal help.
I find my diagnosis seems to alienate me more and more from other people, where really it should unite me with the rare few others who understand me.
I wish I could write more, I feel like I may get more out here soon.
Wednesday 18 August 2010
Not coping
These last few weeks have been really hard. I started to write a post yesterday but I wanted to wait until after I'd been to therapy today so I could understand things better myself.
Since I had the bad experience of going to the NHS therapy team, I have just felt so unreal. It's been so hard to do anything. Getting out of bed seems pointless, I can't answer the door because I'm too paranoid, I hate going to work because of a combination of the two. I'm sick of wondering whether or not people like me, I'm sick of striving to make people so happy when they couldn't (with a few exceptions of course) give a toss about me. I know I have a lot to learn about the world and how people work, but why can't people equally learn about how much these things hurt me? If they're my friends then why does how I feel mean nothing to them?
My therapist has since told me I am going through depersonalization, which scared me because it seems like every week more and more words are coming out and more and more symptoms are starting to show themselves. We discussed how scared I am of life, how I can't cope with the world. As much as I felt better that she understood I started to feel bad and more worried than ever. She's decided I should see her twice a week for a while just until I get over this.
I came home and just cried. I just got overwhelmed by the fact of how big this thing is that I'm trying to beat. I don't want it any more, and I don't know how I will ever get through it. Every time I think about it, or I hear someone say it I get the worst feeling in my stomach. I just want to reach inside and rip it out of me, but I know I can't do that. When I started this blog I really wanted it to be a positive thing and I never thought I'd slip out of the fighting feeling I got when I first started, but then the real situation hits me and I just get scared.
Since I had the bad experience of going to the NHS therapy team, I have just felt so unreal. It's been so hard to do anything. Getting out of bed seems pointless, I can't answer the door because I'm too paranoid, I hate going to work because of a combination of the two. I'm sick of wondering whether or not people like me, I'm sick of striving to make people so happy when they couldn't (with a few exceptions of course) give a toss about me. I know I have a lot to learn about the world and how people work, but why can't people equally learn about how much these things hurt me? If they're my friends then why does how I feel mean nothing to them?
My therapist has since told me I am going through depersonalization, which scared me because it seems like every week more and more words are coming out and more and more symptoms are starting to show themselves. We discussed how scared I am of life, how I can't cope with the world. As much as I felt better that she understood I started to feel bad and more worried than ever. She's decided I should see her twice a week for a while just until I get over this.
I came home and just cried. I just got overwhelmed by the fact of how big this thing is that I'm trying to beat. I don't want it any more, and I don't know how I will ever get through it. Every time I think about it, or I hear someone say it I get the worst feeling in my stomach. I just want to reach inside and rip it out of me, but I know I can't do that. When I started this blog I really wanted it to be a positive thing and I never thought I'd slip out of the fighting feeling I got when I first started, but then the real situation hits me and I just get scared.
Sunday 8 August 2010
Exhaustion, upset and numbness.
The last week or so have been really terrible. I could feel myself starting to go downhill so I rang my psychiatrist. She didn't call back. So my advocate rang her, she still doesn't ring back. I decide to give up on that route and just carry on with whatever I can.
This didn't work out so well, I started to get really tired, horrific feeling migranes, and pains in my arms, shoulders and back. I was sitting at work and I couldn't get up because I was in so much pain and frankly too tired. Then of course, when I came in the next day the paranoia and stress kicked in even more and I had to leave early. I then proceeded to come home, fall on the floor and just break down. Nothing and no-one could console me so mum rang my care team. They came on the phone to me, and I couldn't speak. In the end they just told me to come in on the Friday and see them to talk about how bad I was feeling.
The whole meeting is a bit of a long story, and I worry about writing too many details due to the fact they're supposed to be professionals. However, it was a 3 against 1 meeting and I have never felt so bullied or intimidated and victimised by professionals before. They hounded me with questions until I broke down, and then they hounded me some more. I can't put a word to the feeling I had in those exact moments, I'm not sure I've ever had the feeling before. Since that has happened until now I've just felt numb, I've been searching for reasons to feel anything. I'm trying not to get in the frame of mind where SI is my only option, but it's so hard when it's all I've known when I've felt anything close to this.
The hardest part about the whole thing is I can see people walking on eggshells around me. I know people usually do that when I'm upset but this is something different. Even I don't know how to react to it. I feel degraded and confused about the whole thing. I know every time something gets to me like this it's a learning curve since I never know how I will react, but now I'm just waiting for some kind of delayed reaction.
On a slight upside, therapy is going really well. I am following The Dialectical Behavioural Therapy Skills Workbook and it looks really good. My therapist is supportive, but I'm afraid of telling her about the meeting and being judged. Luckily I had a witness with me in the meeting or I'm sure I'd be tearing myself apart feeling it was my fault.
This didn't work out so well, I started to get really tired, horrific feeling migranes, and pains in my arms, shoulders and back. I was sitting at work and I couldn't get up because I was in so much pain and frankly too tired. Then of course, when I came in the next day the paranoia and stress kicked in even more and I had to leave early. I then proceeded to come home, fall on the floor and just break down. Nothing and no-one could console me so mum rang my care team. They came on the phone to me, and I couldn't speak. In the end they just told me to come in on the Friday and see them to talk about how bad I was feeling.
The whole meeting is a bit of a long story, and I worry about writing too many details due to the fact they're supposed to be professionals. However, it was a 3 against 1 meeting and I have never felt so bullied or intimidated and victimised by professionals before. They hounded me with questions until I broke down, and then they hounded me some more. I can't put a word to the feeling I had in those exact moments, I'm not sure I've ever had the feeling before. Since that has happened until now I've just felt numb, I've been searching for reasons to feel anything. I'm trying not to get in the frame of mind where SI is my only option, but it's so hard when it's all I've known when I've felt anything close to this.
The hardest part about the whole thing is I can see people walking on eggshells around me. I know people usually do that when I'm upset but this is something different. Even I don't know how to react to it. I feel degraded and confused about the whole thing. I know every time something gets to me like this it's a learning curve since I never know how I will react, but now I'm just waiting for some kind of delayed reaction.
On a slight upside, therapy is going really well. I am following The Dialectical Behavioural Therapy Skills Workbook and it looks really good. My therapist is supportive, but I'm afraid of telling her about the meeting and being judged. Luckily I had a witness with me in the meeting or I'm sure I'd be tearing myself apart feeling it was my fault.
Sunday 1 August 2010
First impressions of DBT (Dialectical Behaviour Therapy)
Shortly after I plucked up the courage to tell my private therapist about my diagnosis, she suggested we start doing DBT. I had heard about this before, and after she explained it properly I was willing to give it a go. I have only read the first chapter, and actually completed a few pages but here's what I found.
1. It's definitely for me
I was quite shocked when I first started to work through the pages with my therapist. Anyone else with BPD or similar who first started DBT would probably feel the same. It almost feels like someone wrote it about you, and all the behaviours (destructive and otherwise) that they list are things you thought only you did. It was comforting actually, and what my therapist said was even more comforting.
"If it's only you that's like this, then why did they write this book?"
2. It provokes responses
Reading through it, I didn't really expect very much from it. I just thought I'd see it as words on a page which I usually do, none of the other therapies I've done have really spoken to me, I've just nodded and agreed and got on with it. However, sitting down and having to write out my destructive and negative behaviours on the page made it black and white for me to see made me feel a bit uneasy. Whereas with other therapies I've tried you sit down and someone talks at you, with this I had to be a part of it. I am not a fan of talking about my feelings, or admitting I do things wrong. Even though it made me uncomfortable, I think this is a positive thing. I'm lucky to have a therapist I actually like, I feel like if this had been done with my previous care team then I would have completely withdrawn and not complied at all.
3. It made me feel sad
Not so unbearably sad that I'm going to refuse to do it again, just sad that I'm going to have to learn to do the things that no-one has ever really done for me. As far as I'm aware I have BPD because when I was little I wasn't taught to do things the way I should. I can understand already where things went wrong. It made me feel sad because I will have to learn how to do things like self soothe, and make myself feel better. I guess that's the way it's always been which is why I have become what I've become, but it makes me sad to think that I'm never going to get that (specifically from my family) and I will have to do it for myself. It also makes me sad to think of what I missed out on when I was small.
4. It's going to take a lot of doing
Like I mentioned before, it's really lucky that my support worker found my therapist for me or I really don't know what I'd do. I feel comfortable with her so far, not that I can promise that won't change knowing me and my mood swings. I find talking therapies so unbelievably hard because I'm almost always embarrassed about being me. I feel responsible for a lot of the bad things that have happened to me and my family, and I feel like a bad person for having the emotions and view of the world that I have. It's hard to believe people when you feel like I do about things, but when my therapist says it doesn't make me a bad person I almost believe her. I really want to be committed to doing DBT but I'm always so worried about what's around the corner in terms of my feelings about things, I never get my hopes up any more.
I have my next appointment on Friday so I will see how it goes. In terms of the actual workbook it does look pretty do-able, and hopefully I will at least be able to come up with a plan of action for when things get bad. I have to take things one step at a time, rather than going too far like I tend to sometimes.
1. It's definitely for me
I was quite shocked when I first started to work through the pages with my therapist. Anyone else with BPD or similar who first started DBT would probably feel the same. It almost feels like someone wrote it about you, and all the behaviours (destructive and otherwise) that they list are things you thought only you did. It was comforting actually, and what my therapist said was even more comforting.
"If it's only you that's like this, then why did they write this book?"
2. It provokes responses
Reading through it, I didn't really expect very much from it. I just thought I'd see it as words on a page which I usually do, none of the other therapies I've done have really spoken to me, I've just nodded and agreed and got on with it. However, sitting down and having to write out my destructive and negative behaviours on the page made it black and white for me to see made me feel a bit uneasy. Whereas with other therapies I've tried you sit down and someone talks at you, with this I had to be a part of it. I am not a fan of talking about my feelings, or admitting I do things wrong. Even though it made me uncomfortable, I think this is a positive thing. I'm lucky to have a therapist I actually like, I feel like if this had been done with my previous care team then I would have completely withdrawn and not complied at all.
3. It made me feel sad
Not so unbearably sad that I'm going to refuse to do it again, just sad that I'm going to have to learn to do the things that no-one has ever really done for me. As far as I'm aware I have BPD because when I was little I wasn't taught to do things the way I should. I can understand already where things went wrong. It made me feel sad because I will have to learn how to do things like self soothe, and make myself feel better. I guess that's the way it's always been which is why I have become what I've become, but it makes me sad to think that I'm never going to get that (specifically from my family) and I will have to do it for myself. It also makes me sad to think of what I missed out on when I was small.
4. It's going to take a lot of doing
Like I mentioned before, it's really lucky that my support worker found my therapist for me or I really don't know what I'd do. I feel comfortable with her so far, not that I can promise that won't change knowing me and my mood swings. I find talking therapies so unbelievably hard because I'm almost always embarrassed about being me. I feel responsible for a lot of the bad things that have happened to me and my family, and I feel like a bad person for having the emotions and view of the world that I have. It's hard to believe people when you feel like I do about things, but when my therapist says it doesn't make me a bad person I almost believe her. I really want to be committed to doing DBT but I'm always so worried about what's around the corner in terms of my feelings about things, I never get my hopes up any more.
I have my next appointment on Friday so I will see how it goes. In terms of the actual workbook it does look pretty do-able, and hopefully I will at least be able to come up with a plan of action for when things get bad. I have to take things one step at a time, rather than going too far like I tend to sometimes.
Friday 30 July 2010
Getting diagnosed
I was diagnosed with Borderline Personality Disorder on 21st July 2010. It wasn't really a formal sit-down and explanation kind of thing. It was more a drop it into conversation at a meeting and wait for me to say "Wait, what?".
I have been under mental health teams since I was 13 years old. I have been given a few indications about why I find life and other humans so intolerable and difficult to connect with, including anxiety disorders. One doctor also told me it was probably because I was "just a miserable person". I was shuffled around from one assessment to another. I never received any real solid treatment, I just floated around in the mental health system for years.
So, to be suddenly hit with a real diagnosis hit me very hard. At this time of writing I still don't think the shock has gone. Don't get me wrong, they had thrown the personality disorder words about a few times. I just never thought they'd give me something to fight against. I thought I would be floating around in the system for many more years to come.
They didn't really explain much about it, other than they thought I was bipolar but now they decided I had borderline personality disorder. Then they moved on with the meeting. At the time I didn't really say much, I felt a bit numb. I've always wanted to know exactly what I was up against, and they'd never tell me. Now I knew and it was a bit too much to take in. I almost wanted her to take it back.
Of course, in the UK where I am the healthcare is free. While I love the NHS, the downside to it is the mental health care. They told me I'd have to wait a long time for any kind of therapy. Luckily for me though, I had already been seeing a therapist that work had kindly paid for for me. When I bought it up with her, she was brilliant. She helped me understand things a bit better. She offered me DBT, and yesterday we started to go through the first chapter. Although I still haven't got to terms with my diagnosis yet, I am really thankful I have someone like my therapist to help me. If work hadn't have paid for me to see her, I'd still be waiting around for something to happen.
59YSYNJ563B6
I have been under mental health teams since I was 13 years old. I have been given a few indications about why I find life and other humans so intolerable and difficult to connect with, including anxiety disorders. One doctor also told me it was probably because I was "just a miserable person". I was shuffled around from one assessment to another. I never received any real solid treatment, I just floated around in the mental health system for years.
So, to be suddenly hit with a real diagnosis hit me very hard. At this time of writing I still don't think the shock has gone. Don't get me wrong, they had thrown the personality disorder words about a few times. I just never thought they'd give me something to fight against. I thought I would be floating around in the system for many more years to come.
They didn't really explain much about it, other than they thought I was bipolar but now they decided I had borderline personality disorder. Then they moved on with the meeting. At the time I didn't really say much, I felt a bit numb. I've always wanted to know exactly what I was up against, and they'd never tell me. Now I knew and it was a bit too much to take in. I almost wanted her to take it back.
Of course, in the UK where I am the healthcare is free. While I love the NHS, the downside to it is the mental health care. They told me I'd have to wait a long time for any kind of therapy. Luckily for me though, I had already been seeing a therapist that work had kindly paid for for me. When I bought it up with her, she was brilliant. She helped me understand things a bit better. She offered me DBT, and yesterday we started to go through the first chapter. Although I still haven't got to terms with my diagnosis yet, I am really thankful I have someone like my therapist to help me. If work hadn't have paid for me to see her, I'd still be waiting around for something to happen.
59YSYNJ563B6
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