Monday, 3 November 2014

Birmingham University Research Study: An Exploration of Mental Health Blogging | 'Ad'

If you are unaware of this Study then please read this. I wasn't allowed to blog about it whilst the Researcher was still collecting information, and now I have permission to! So, here's the questions I was asked and my answers...

Question 1 Can you tell me about your experiences of writing a ‘personal journal style’ blog, bearing in mind the following pointers, and sharing any extracts from your blog which help to illustrate your answer?
-          How would you describe what you do to someone who is new to this idea?

If someone asked me what I blog about, I tell them 'my life.' When older people have asked me what 'blogging' is, I tell them it's like having your own website with anything you want on it.

-          What prompted you to start? What keeps you blogging now?
I began my blog after being an inpatient on a specialist ward in a psychiatric hospital for about six months. I’d been through a lot since coming to this hospital but I was finally ready to start taking my recovery into my own hands and to properly try for it. I agreed with my Named Nurse that I would start writing about what professionals have named my ‘trauma.’ It would be hard because for the first time in a long time, I wasn’t going to leave anything out; no missing details. So I began the blog for these two reasons; as a way to document my journey and to speak without feeling I had to censor anything at fear of any kind of retribution.

-          Have you ever taken a break from it, or considered stopping? For what reasons?
On two occasions in the fifteen months since I began blogging, I have considered stopping. The first came when I received two negative tweets from people I didn’t even know and they were judging me. It took me back for a minute because it wasn’t the first time that I’ve had someone pass a negative judgment on my actions and it made me think that there must be so many people out there reading my blog and thinking the worst of me, and at first I intended to apologise for my behaviour but then I thought again… These people have no idea about me; it’s impossible for me to tell the world absolutely everything about my life through my blog and no matter how much I do disclose, I can never guarantee that it’ll be met with my ideal response and I realised that’s something I’ll just have to accept if I want to continue blogging the way I am. The second thing to make me consider stopping blogging was when we had a new Ward Manager begin working on the ward I’m an inpatient on. The main comment from him was in a meeting with all of the other patients and one asked him a question and I told her that he didn’t want to ‘say too much or it’ll end up on the blog.’ I spoke to him after this and told him I didn’t want my blog to be misinterpreted as some sort of low-rent gossip site; that everything on it is the truth and if he has to censor what he says at fear of others reading about it, then perhaps it was something he shouldn’t be saying in the first place. I hadn’t realised how protective I’d become over it until then, I’ve continued to defend it.
I’ve continued to blog because it has become an extension on the therapy I have here at the hospital; I enjoy having somewhere to ‘vent’ and ‘rant.’ And it’s become somewhere for me to process my thoughts and feelings on things that have gone on. I’ve also received a lot of praise for my blog and to be told by just one person that I’ve helped them; is enough to make me continue blogging. To have people tell me I’ve inspired them to blog themselves or to get help for their own experiences is amazing and something that I never realised would be possible to do both through the internet and whilst I’m in hospital. I thought I’d have to wait for my discharge date before I could help fight mental health discrimination so to be able to do it whilst I’m an inpatient is a massive reason for me to continue working towards recovery.
The only other thing would be if you had an extracts from your blog that help illustrate your response?
It’s really hard for me to pick out quotes for you since I have so many posts and they’re not always on one set subject. I did do one post though about the negative comments from the strangers and it’s here: http://imnotdisordered.blogspot.co.uk/2013/08/the-twitter-criticisms.html if you’d like to read through and pick out anything you’d like to quote?

I find it interesting in that you seem to link your blog with your journey of recovery, and “as a way to document my journey” and an “extension on the therapy” – do you feel that blogging has been an important part of your recovery?
I wouldn’t say that without blogging I wouldn’t recover but I do think it’s helped the speed of my recovery because it’s helping me to get things a bit straighter in my head.

It sounds like there were some difficulties you encountered, like with the negative tweets from others, and your experience with the new ward manager. It seems you showed some real strength and resilience in facing those situations, and you said “I can never guarantee that it’ll be met with my ideal response and I realised that’s something I’ll just have to accept if I want to continue blogging”. Alongside this, you mentioned that you feel that you have to “defend” it sometimes – does this happen often? What kind of thing are you defending it from?
No, I haven’t had to defend my blog since then and at the time, I felt I was defending my actions from misunderstandings, since the criticisms were about my behaviour more than the actual blog. I’ll take criticisms when it’s deserved and constructive - if anything I’m probably my harshest critic.

Question 2 What’s it like writing about yourself knowing an ‘audience’ will read it, bearing in mind the following pointers, and sharing any extracts from your blog which help to illustrate your answer?
-          Who is your ‘audience’ and do you feel any connection with them? Does your ‘audience’ respond to what you write? What’s that like? Is this different in any way to the relationships you may have offline?
I think the people who read my blog are primarily those involved in or who have an interest in mental health. Although, I admit that in the beginning, I didn’t appreciate exactly how wide an ‘audience’ that meant; I know that a lot of my Hospital staff read it (from Nursing Assistants, to OTs and even the Hospital Manager), a lot of my friends on Facebook do, my community team and my family, to name but a few. I think I do find it slightly strange when I get messages from people who I’ve either never met, are friends of friends, or people who I never would’ve imagined would read it.

-          Do you get anything different from having other people read and/or respond to your writing than if you wrote the same things in a private journal instead?
I’ve had quite a lot of positive responses from people, the most memorable were from the National Service User Recovery Lead; Ian Callaghan who liked the blog so much he asked me to do a presentation on it and also wrote a guest blog (http://imnotdisordered.blogspot.co.uk/2014/04/being-brave-guest-blog-by-ian-callaghan.html) and from one of the girls who was featured on the BBC3 documentary Don’t Call Me Crazy. That was really strange because I could remember watching her on TV and feeling inspired and then there she was telling me I’d inspired her to begin her own blog! It was a little surreal and I ended up writing a blog post about it: http://imnotdisordered.blogspot.co.uk/2014/02/we-are-prepared-for-insults-but.html. I do enjoy the positive responses though; they remind me of why I’m blogging and encourage me to continue with what I’m doing. The difference between my relationship with people offline and those online would probably be the personal side of things; properly knowing someone and their habits etc. I guess the relationship feels more one sided because it’s just me telling everyone about me but I normally write my blogs by forgetting that others will be reading them (unless they’re aimed at someone!) so that I don’t edit what I write.

-          Is it different conveying your experiences over the internet rather than discussing them verbally in person?
I think the most different thing about writing things that others can read is the feeling of relief which is almost the same as the relief you would feel after telling someone a secret. When I write something in a private diary it sort of feels as though it’s still a part of me. It’s very rare that I write something on my blog that I haven’t talked through with the staff so it’s not as though I blog rather than discussing things in person; usually I blog because of a chat I’ve had with staff about something. Although, the odd time I’ve found myself attempting to catch up with staff I haven’t seen in a while and I’m met with the “oh yeah; I read that on your blog” response. But it’s just something I’ve had to get used to and have grown to accept as I’ve continued to blog.

 I was curious to know a bit more about what that’s like, knowing the people around you have read your posts?
To be honest, I completely forget about that staff might’ve read what I’ve blogged about them.

 If I’m understanding what you’re saying; is it like by putting the writing out there and knowing others have read it, it makes things feel more ‘real’?
No, it’s not more ‘real.’ Just, a sense of being unburdened. Like that saying that a problem shared is a problem halved.

Question 3 What does the term ‘wellbeing’ mean to you? Does blogging, and your experiences of it, have any impact on your wellbeing, bearing in mind the following pointers, and sharing any extracts from your blog which help to illustrate your answer?
To me, ‘wellbeing’ means being safe, happy and healthy. My blogging has definitely improved my mood which, in turn, has improved my safety.

-          Does blogging impact on any other areas of your life when you are offline?

I would say the only other possible area of my life blogging has impacted on has been my relationships. People that I’m close to but who are a fair distance away (I’m in a Hospital miles away from home) get a better idea of what’s going in in my day to day life because when we talk I obviously have to shorten things; whether for a phone call or to the length of a text. And there’s also been what I’ve mentioned in previous questions about some staff in my Hospital avoiding saying things to me at risk of it going onto the blog.
-          Has your life changed in any way since you have been blogging?
-          What would be different for you if you were no longer blogging?
My life has changed since I’ve been blogging but I will say that that is due to a lot of different factors. Blogging has helped; it helps me to process things and sometimes, when I’m really angry, I just open up a blog post and type it all out and then by the time I’ve finished typing, I’ve calmed down and I just cancel the post from being published. So I think that if I stopped blogging the two main things to change would be my ability to gain insight into situations and that I would have a lot more rants to people.

Question 4 Can you tell me a little bit about how you came to be diagnosed with/ identify with the term ‘Borderline Personality Disorder’ (BPD), bearing in mind the following pointers, and sharing any extracts from your blog which help to illustrate your answer?
When  I first came to the attention of services, I struggled to put things into words. My symptoms (at the beginning these were mainly voices and suicidal thoughts) had taken me by surprise and I couldn’t understand what was happening to me. So a lot of people were worried; I guess no one expected me to overdose. And so, I was put on a secure unit (a PICU; Psychiatric Intensive Care Unit) for five months to decide whether or not I had psychosis. I was medicated so much that they had to call an optician in as I needed glasses because I was given so many sedatives that the muscles around my eyes had relaxed and I couldn’t focus on anything. It’s strange though because at the time, I didn’t really see that I was mentally ill, but when I think back… I barely remember any of my time on the PICU and the people who visited me there have told me that they sometimes wondered if I even knew who they were.
BPD was first associated with me in a hospital discharge summary as a ‘preliminary diagnosis.’ No one had ever mentioned the term to me before and then I ran away once and was detained by police under section 136 of the Mental Health Act 1983 and held in custody until I could have my Mental Health Act assessment. I remember one of the Psychiatrists asking me a lot of questions and then he explained that his questions had been on each of the symptoms of BPD. He told me you only needed five of the nine symptoms to be diagnosed, and that I had all nine, I remember going home and meeting with my community team. I asked if I now had BPD and they said they weren’t going to decide just yet. I later found out that some professionals try to ‘put off’ diagnosing a patient with BPD as it changes the way services treat them, there was also the fact I was only 18 when I first came to their attention. I don’t remember anyone telling me I was officially diagnosed, it just seemed to come about and my CPN told me about a book to help me understand the diagnosis.

-          What do you think or feel about the term BPD?

 think I was quite relieved to have my diagnosis; and when I read books it was so reassuring to hear of other people feeling the way I felt and doing the things I would do. I felt less alone. I felt a bit more hopeful too; I thought that knowing what was wrong with me would mean people knew how to help. Once the diagnosis was formal, I learnt of the stigma. I still find it baffling that some mental health professionals can hold a stigma towards a valid mental health diagnosis. I also still resent the majority of services back home who made me feel my diagnosis was a death sentence. I quickly realised that I was now less entitled to help or support. Luckily, BPD became what it should have always been; a means for professionals to see what sort of help I needed. Rather than continually telling me that it’s recommended not to hospitalise those with BPD, they began to find me suitable therapies for my diagnosis. In all fairness though, mental health professionals have a very hard job in determining if someone’s symptoms will persist. Since coming to the specialist hospital I’m now in, I’ve felt a lot of resentment to some of the girls who have taken one overdose and immediately been referred. I felt like I had to earn my place here. My only other criticism of BPD is it’s name; those who haven’t researched the diagnosis, frequently misunderstand the ‘personality’ part and assume that you, as a person, are disordered… Hence my blog’s name!

-          Are your experiences, thoughts, feelings, understandings etc. of BPD, represented in your blog? How?
-          Is blogging tied up in any way to the BPD? Do you think any of your experiences of writing would be different if BPD wasn’t part of the picture?
I’m trying to use my blog as an opportunity to teach people about BPD. I have two pages dedicated to the myths of BPD and each of the symptoms, including how they present themselves for me. I try to make things relatable so that people can read my posts and think ‘oh yes; I’ve felt a bit like that before.’


Many thanks to Laura (the researcher) for asking me to take part in this study; it's an amazing opportunity that would've never came up if it weren't for my blog.