Reading up on your disorder – more harm than good?

I’ve only ever actually bought one book relating to mental health – The Borderline Personality Disorder Survival Guide which I bought straight after my diagnosis. I also have Cyclothymia and anxiety, but BPD was the diagnosis I found hardest to understand and get a hold of what it actually is.

Obviously it goes without saying though that I have constant access to Google – and I do research my other conditions sometimes as well.

20150125_221637But what I want to know is, is it a good idea? Is it a good idea to gain clarity on what’s ‘wrong’ with you, or does it become a self-fulfilling prophecy? Is it better to just get a diagnosis and allow the doctor or psychiatrist to decide what they feel is best for you, and you continue only knowing as much as they think you need to know?

Do I for example read:

It simply means that you have a pattern of thinking, feeling, and behaving that may be hindering your ability to have a high quality of life, keep your relationships going strong, or reach your goals.

…and make that a reality for myself? Do I read that clear defining statement of what BPD is and begin to automatically think that I can’t be in a strong relationship and therefore push my boyfriend further away until the relationship breaks down? Or do I read that I can’t reach my goals and therefore decide to leave university early because it’s been said that it may be too difficult for my personality type to handle?

Being someone with BPD, I already don’t have a strong sense of identity, so what’s stopping the things I’m reading from becoming apart of my already shaky identity and not necessarily in a positive way?

It’s natural instinct to want to find out more. As humans we are inquisitive and seek answers to our problems. But is it wise? Just because we are programmed to do something doesn’t make it the right thing to do.

I’m not necessarily talking about the world of blogging, because that’s on the whole about sharing personal experiences. It allows for us to have a way of letting our frustrations go and it allows us to feel comfortable in the knowledge that someone will listen and understand.

Blogging is like a world where people are OK with talking about their problems and don’t feel ashamed of it (which is great!), and it should happen in the real world too – but it’s not medical.

Is that where the line needs to be drawn? Is it negative when we start to get medical?

Should we know about the ICD-10 of medical classification unless we’re trained to know this stuff for professional reasons? Should we be able to so easily gain access to lists of symptoms that allow us to become self-fulfilling hypochondriacs?

Is it self-destructive? Does it make us more prone to fitting into these black and white labels because we become what we’re told we are?

I don’t know.

lovelauren

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58 thoughts on “Reading up on your disorder – more harm than good?

  1. lenasclove says:

    I have wondered this as well. There is a new book out called The Body Keeps the Score (http://www.amazon.com/The-Body-Keeps-Score-Healing/dp/0670785938) and I have wondered if it would be helpful to read about PTSD more in-depth or if it would just make it worse, especially when they offer other “case examples” which might just end up being triggering.
    I do feel like sometimes it can be empowering though, because just being told what’s wrong with you and how you are going to get “fixed” can make me feel so helpless. I agree, it’s a big unknown. Thanks for raising the subject.

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    • bylaurenhayley says:

      Thanks for commenting – I’m glad you liked the post. It is a really tricky subject. I for one can probably identify possible traits that have gotten worse because of things I’ve read, but I also know that probably won’t stop me in the future!

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      • tamarawgray says:

        I honestly think that when things “get worse” you are actually healing more. I think some part of your psyche lets in more to be processed and released. Have you ever talked with a more wholistic therapist?

        I believe it’s a journey and the main thing is to take it for what it is. But you always get to figure out what you are going to do with the information. You are never “just someone with BPD.” You know? You are Lauren Hayley – BPD Cyclothymia (Insert Adjective) Extraordinaire! 🙂 It seems to me you are doing a lot of great things with your life which would be more exciting to identify with than mental illness. Hope that doesn’t offend you. I just think your BPD, etc, is more a tool than anything else.

        My therapist described it as if I had been given a broken limp, and it wasn’t set right. It healed, and functions, just a little differently and I will certainly be able to and expected to use it to make use of my other wonderful skills and talents.

        I’m sure you can use your skills and talents to overcome any obstacle. Even relationships. You might end up having a great relationship, just looked at and growing from a different angle. People can and do change themselves, however painstakingly, all the time. Sorry this is so long. 🙂 It’s more like a blog post in your blog post. Want me to remove it?

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      • bylaurenhayley says:

        Haha don’t be silly, thanks for commenting, I’m glad you’ve taken the time. I do know exactly what you mean. It’s just trying to look at it from a positive angle. I’ve never looked into wholistic therapy but I’ll check it out!

        Liked by 1 person

      • tamarawgray says:

        I love the wholistic approach because it focuses on you as a whole, not just by compartmentalized symptoms. I do more physical body therapy. I did EMDR awhile ago and the day before a session (I was going weekly), I had sudden unusual back pain. A few days before then I had distinct emotional memories about my stepdad. Ithought nothing of it but when I told my therapist (the pain was still there) she was very interested in the memories and she merely asked me to simultaneously think of where the pain was, what my emotional memory was, and she wanted me to breathe slowly and imagine the air going to that part of my back. I did that for awhile and soon felt better – no pain at all. These sessions were very exhausting afterwards cuz it used my body and mind together, but by the next day I always felt better than I ever felt before! It may sound kooky but I highly recommend wholistic therapy and EMDRl

        Liked by 1 person

  2. mbritt17 says:

    This has been on my mind for so long and I just couldn’t think of a way to describe it. I read this book as well and I find myself being very mindful of my behaviors, but most of the time I don’t do anything to stop it sometimes because I feel like I am just living up to my illness. Other rare times I want to fight it, but it never gets me anywhere better as I just slip back anyway. It is the black and white thinking and not knowing who I am so sometimes I find myself clinging to the symptoms of this disorder and my other disorders because it is all I know. I did however learn a lot about why I do some of the things I do though, so I wouldn’t have a clue where the line should be drawn. It’s a complicated subject though for sure.

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    • bylaurenhayley says:

      I think it’s incredibly complicated too. Like you say, it’s nice to get some answers on why you are how you are, but it can go too far. Before I was diagnosed I was so desparate for someone to tell me what was wrong so that I could start to get better. But this meant I trailed through the internet reading about disorders and trying to think of examples of how those traits fit me – so that I could go ‘I have this!’. And even now there’s confusion on the level of bipolar that I have, I’m back and forward with the doctor, so I notice every single thing as a symptom, whereas maybe it’s just me and I shouldn’t push it. Because if I do I’m just going to continue to be misdiagnosed because i’ve made symptoms up in my own head, which isn’t useful for anyone!

      Liked by 1 person

  3. AlphaSilvr says:

    I’ve always wondered this myself. I have even asked my therapist a few times, but the symptoms were generally there before I started to ask those questions. But now, years later I am still fighting, so am I “stuck” in a rut that I can’t get out of or do I genuinely still have my disorders?

    Thank you for eloquently putting those thoughts into words and sharing them.

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    • bylaurenhayley says:

      Thank you – It’s incredibly complicated I’m not sure anyone really has the answer. Whilst I do have enough of the characteristics to be diagnosed with my disorders, I don’t necissarily have all of them which is a good thing obviously, but when my brain reads about these things that I don’t have, I start to invent them in my own mind and they become a part of me. I can definitely recognise this. But at the same time I can’t say I’ll never research again, because next time I need an answer to something that’s the first thing I’ll do!

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  4. watchingthewheels says:

    When I finally gave in and accepted that what I was suffering from was depression I read everything I could get on it. My purpose was to try to find something in all those pages to help me heal. That’s how I came across mindfulness and it has been an excellent tool 🙂

    Liked by 1 person

  5. amylynnrand says:

    These things you describe are definitely important to think about! I personally think focusing on symptoms is not all that helpful. Coping strategies are something you can’t really get enough of though, in my opinion. That way you can choose the ones that work best for you. I really think that the people who are close to you should do some reading too. It can help them gain empathy. 😊

    Thanks for the thought provoking post.

    Liked by 2 people

    • bylaurenhayley says:

      I’m glad you like the post. It’s an interesting one for me. I agree coping strategies are more important in healing, but that’s easy for me to say now that I have a diagnosis. Before then I was desperate for a label because I didn’t know what coping strategies would work unless I researched what was wrong in the first place. I don’t think there is really an answer!

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  6. staystrong10 says:

    Great post! I think it’s good to know what’s going on with us. But I understand the self-fulfilling prophecy aspect of it. For me, I read all I can on depression/self-harm, just to learn. I don’t try to fit into the label of it. The labels are black-and-white, whereas real life is definitely not.

    Liked by 1 person

  7. Fumbling Through Therapy says:

    I have read anything and everything I could find on my diagnoses. I constantly look for a reflection of my truth and my experience in the words of books and articles and blogs. I try not to use it as a comparison and allow myself the flexibility to realize that all people are unique, thus each presentation of an illness will be unique to them. But I have found tremendous comfort and relatability in doing research and connecting my story to others and to actual clinical findings.

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  8. Laura S. (Borderline Med) says:

    Hey Lauren,
    It’s definitely not a black/white, yes/no issue. I think the most important thing is to strike a balance and to have the grace to admit to yourself when you’ve taken the whole “searching for information” part too far. Fortunately I feel I can speak both from the patient’s point of view and the doctor’s. Being a medical student (and interested in psychiatry) I already knew a lot about my diagnoses before I even went to a psychiatrist (symptoms, epidemiology, DSM criteria, etc). Still, when I was given my respective diagnoses I went through a time where I searched a lot of information on them . Eventually, I got to a point where I felt I was satisfied on the knowledge front and decided it was enough, seeing as my doctors and I were on the same page. Nowadays I barely ever search for anything BPD or depression-related because it can, indeed, become an obsession to the point of a self-fulfilling prophecy. I just let my doctors do their job. And really, we’re not just walking mental illnesses or disorders, so it’s important to recognize when you’ve gotten to a point where you’re holding on to your diagnoses for dear life. In conclusion, it’s definitely good to look for information, but it’s important to not build an identity around that. Take care!

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  9. suchled says:

    Two things first. I don’t have BPD and secondly I am not a Doctor. I’m just an old man. But if you answer one of your own questions. “Do I… think that I can’t be in a strong relationship and therefore push my boyfriend further away until the relationship breaks down?” I think the answer to that is pretty clear. So I guess you throw that book away and get on with your life. You seem to be doing a lot of good stuff so keep at it.

    Liked by 1 person

  10. Zoe says:

    I like knowing. It helps me cope with the days where I feel like I’m a monster. By knowing, by reminding myself of what I have and what it is, I remember that I am not my diagnosis, but rather that I’m surviving through it.

    Liked by 1 person

    • bylaurenhayley says:

      Yep I definitely like the idea that by researching you feel less alone. There’s a name for what you have and so you’re not being silly, you’re ill. But there are always ways of getting better. I was in desperate search for a diagnosis before I got mine for that reason!

      Liked by 1 person

      • Zoe says:

        It’s been good to follow your blog and read up on your story. I’ve recently been finding I have a lot of BPD symptoms, on top of my bipolar ones… and that has prompted me to seek another evaluation.

        So really, thanks to you and everyone who shares their journey, I could realize there was something missing in my treatment / diagnosis. 🙂

        Like

  11. crazyruthie says:

    you bring up a very thought provoking point.

    i can see what you mean. i can apply the idea to my substance abuse problems. when a doctor prescribes me a drug i am not familiar with, i immediately look it up to see if it can be abused and how. sometimes i actually try misusing it as wikipedia describes people doing it.

    i should know all about drugs i’m taking for my own well being, but what if i abuse something only because i read that it has a side effect i want to experience?

    i have no idea what should be done about it,if anything, but’s a good thing to keep in mind.

    thanks for sharing your thoughts!

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  12. Sophie says:

    I think it can be helpful, i researched my daughters condition and read for days which actually lead to a secondary condition. Ive learnt about my mental health problems before at uni from a nursing point of view which is actually more helpful than what patients get in books and leaflets. I guess its a bit of both, sometimes it can bring comfort but can cause anxiety

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    • bylaurenhayley says:

      I think it’s definitely useful for other people to read around my condition. My boyfriend has and my mum has – it kind of gives them and understanding into why I am how I am and sometimes it just helps them a bit. I also think it’s useful to read up on it from my own perspective, but there definitely is a part of me that takes what I read on board too much. I’m not sure there is a definitive answer on what the solution is, but it’s a slight problem that like you say, can cause anxiety. I’m glad it’s done you no harm though!

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      • Sophie says:

        I drive myself up the wall sometimes lol my partner reads up and my blog, it helps him but for me im best off not reading as i cause myself more anxiety. Its a fine balance between enough and too much but im sure youll find it and as long as it doesnt cause too much anxiety knowledge is power

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      • bylaurenhayley says:

        I think the difference is maybe that my boyfriend very rarely reads my blog. I’ve never stopped him but he chooses not to (I’d be genuinely surprised if he even knew the url). It’s more the facts on the internet that he reads or if I see a useful article or youtube video that relates to me i’ll forward that on to him!

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      • Sophie says:

        My family dont read my blog they all say im remembering wrong, but he does. I think he reads it because i find it hard to vocalize what im feeling, he finds it helpful but hard to read at times

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      • bylaurenhayley says:

        I guess it’s easier than you explaining it to him, I’m not incredibly vocal at speaking out loud about my problems either. Whenever I’ve had to tell my family something difficult I’ve always handed it to them on a piece of paper!

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      • Sophie says:

        My family are unsupportive to say the least, im glad you get support from yours 😊 the trouble with reading too much i find is i either dont fit what their saying and then worry that somethings really wrong or freak myself out how much something sounds like me

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      • Sophie says:

        I do the same for my daughter although she tells me to leave her alone sometimes haha its all done out of love 😊 even when you know not to you do, its hard to see someone you love struggle

        Liked by 1 person

  13. georgielizabeth says:

    I think it is different for everyone. Some people really like to know as much as possible, others find it detrimental. Maybe it is about working out what works best for you.
    I think when reading is problem-focussed it can be difficult and perhaps drag us down, but when reading about possible solutions or ways to understand ourselves better that can be much more beneficial.
    I have a great dislike of self help books. If I do read them ~I tend to just pull out the things I find helpful and leave the rest. At the end of the day BPD presents in many different ways with each unique person so one opinion in a book might relate to 60% of people with BPD and not be at all applicable for the other 40%. I prefer to read things written by the sufferers themselves, I find it gives me a much better insight. With that though I still take what I can relate to/find useful and leave the rest.

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    • bylaurenhayley says:

      Yes you’re probably right. From reading all the comments I’ve gotten on this post, it seems people are in two minds about it. Some people think it does them harm and some people think it does them good. Maybe it’s just finding the balance for yourself! I’m glad that they help you anyway 🙂

      Liked by 1 person

  14. Paul's Letters says:

    Reblogged this on Paul's letters… and commented:
    Check out this great post by Lauren Hayley- what she writes about here is an experience I go through with my depression and my anxiety and she does a wonderful job capturing the thoughts and feelings that accompany digging deeper into your own mental health issues through the myriad of texts and research.

    Like

  15. positiveandbipolar says:

    I think for some people knowing is power, but for others knowing is to make one too aware. I know people that will read about the symptoms for a physical condition and then later feel those symptoms due to an anxiety they have about getting sick. Whereas for me I read the facts about both physical and mental conditions and I feel like it helps me understand and know what is happening which comforts me.

    I guess the number one warning sign that reading up on your condition is a bad option for you is if it feels like an obsession or a worry when doing so. If it provides a level of comfort, understanding or of empathy (like when listening to a sad song) I think it’s a great way to feel more in control of what’s happening or more accepting anyway.

    Love the blog by the way!

    Like

    • bylaurenhayley says:

      Thank you! See I think it’s the opposite for me. It’s not feeling anxious about what’s wrong with me, it’s desperately trying to fit into a diagnosis so that there’s a reason for all this rubbish! It’s strange isn’t it!

      Liked by 1 person

  16. mschrysalis says:

    Lauren, I love how thought provoking your questions are. And you’re right there are no easy answers and each of us has to find our own way through the morass of information because on the one hand knowledge is power and on the other extreme too much information can be paralyzing. It’s ultimately a balancing act.

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  17. stuffthatneedssaying says:

    I like to read everything I can. I have a habit of wanting to understand all the details of something, which has been very helpful in work situations. I’m the person who isn’t content to just follow a few instructions blindly – I have to know how everything fits together and why things are done the way they are. Same with my diagnoses.

    Liked by 1 person

  18. prideinmadness says:

    I think it’s up to you what you do with the information. I know I frequently have to wade through information that makes me sad to pick out the bits that I can apply positively to my life. The sentence you used as an example, says to me that it MAY be an issue and can help me pinpoint the areas I need to work on and how I can go about doing so.

    Of course though, I have read many mental health books that have made me angry so I just stopped reading them and found something else. I suggest reading Borderline Personality Disorder: Perspectives on a Stigmatizing and Overused Diagnosis. It’s a great critical read that views BPD as untreated trauma, links it to misogyny and talks about how understanding the experience can help professionals support people given the label.

    http://www.amazon.ca/Borderline-Personality-Disorder-Perspectives-Stigmatizing/dp/1440832293

    Especially for BPD I tend to not trust books on the subject. I tend to come away feeling like a witch.

    Liked by 2 people

  19. mindspawned says:

    Yes, no, maybe! Sometimes it has been good for me and other times it hasn’t been, I guess that just kind of comes with having bipolar, lol. For the most times it has been good for me though. It has helped to know what my symptoms are and especially to know that what ever I’m feeling right now, is not the way it will always be. Except for when I’m in a good ecstatic mood, then it’s not so fun to know. 😉

    I guess it comes down to how clear headed I am when I am reading and the reason behind me researching. I remember being depressed before I knew I had bipolar, researching about Avoidant personality disorder. It sure wasn’t helping my depressed mood! I do have AvPD, and the things I was reading then was very doomy. I Would never be capable of a relationship without bringing a partner down, or to hold a job, or even go outside! Wait, what! And then I of course found people that were going through all of that and kind of kept themselves in that state without doing much about it. On the internet that is, I ironically don’t know anyone in real life that has it, as far as I know.

    I am glad I kept researching though. Now I know that having my disorders is more like a constantly moving pendulum. They’ll always be there, but I can keep working on learning to live with it. Especially with AvPD, I can work on that and develop the parts of my personality that I am missing, and gradually lose more and more symptoms. Although some basic ones will always be there, just being less. Like now I believe my self confidence will always be shaky, but when it does start to crumble, I will try to think that: Yes, this is the way it is, and it’s okay. This way I don’t have to worry about “Oh no, it’s happening again, I’m failing!” hence making it even worse for myself.

    Anyway, enough rambling and sorry for any misspelling, I wanted to answer this from the top of my head. Thanks for a great post. 🙂

    Liked by 1 person

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