Getting a Mental Illness Diagnosis: Good or Bad?

Being diagnosed with an illness, mental or physical, can come with a whole host of thoughts and emotions. It can feel like your world is crashing down as you sort through what the diagnosis means, in terms of treatment and prognosis. Or it can feel like relief and understanding, explaining symptoms and behaviours, and now you can get down to business and get better. It can hurt or it can harm.

So getting diagnosed with a mental illness…is it a good thing or a bad thing?

On the good side, having a diagnosis can help in terms of knowing what treatment may be most effective. It can help your GP or your psychiatrist know what, if any, medications may help ease or reduce your symptoms. It can also help when finding support, whether in groups with facilitators or through social media. Finding those with similar experiences and the same diagnosis can go a long way to helping you feel like you are not alone and that what you’re experiencing is more common than you might think. Others who share the same diagnosis can also offer support, tips, advice and suggestions on treatments or medications that may have worked for them.

On the bad side, there can be a stigma that accompanies your diagnosis that can lead to misunderstanding, exclusion, miscommunication, and even being ostracized, including from health professionals. It can also be a trauma in and of itself as you try to navigate the waters of treatment and support, particularly when both are in short supply. Your diagnosis can even make you ineligible for treatment or social services among other things as most programs require certain criteria to be met. And it can leave you feeling boxed into a certain expectation of how others may expect you to think, feel, and act. This can be particularly hard when your symptoms are not “by the book”.

Let me think this out.

How effective is it to have a diagnosis? Is it mandatory? Should it be mandatory? Should it be on an ‘as needed’ basis? Does it help? Or does it make things worse? If a diagnosis is necessary then what if you are misdiagnosed? Or what if you are given no diagnosis at all? What if your symptoms are all over the place and don’t fit into any one category or disorder, does that mean you don’t get a diagnosis because you don’t ‘technically’ meet the criteria in the DSM? What if you only have six of the ten symptoms of a disorder, does that mean you aren’t still struggling with this particular disorder? Does that mean you shouldn’t be given any treatment for that disorder? What if your symptoms fluctuate enough that on any given day they can either be drastically increased or reduced, making a diagnosis applicable on one day but not on the next?

The fluidity and impermanence of our experiences and our symptoms means that a diagnosis should be just as fluid and impermanent. Our symptoms and our behaviours can ebb and flow. Some days we may have all of the symptoms and some days we have none. Some days we are several disorders and some days we are one disorder. Some days we may even have no disorder at all, though I imagine those days are extremely rare for the vast majority of us.

We can go months, even years, without exhibiting most symptoms with maybe one or two floating around us most of the time. We can have all the symptoms bombard us every day, all day for months or years on end. Or we could just be all over the place with our symptoms, which most of us experience.

If our symptoms and disorder are not all up in our face all day, every day, does that mean we aren’t struggling or suffering? Do we have to be struggling every single moment of every single day in order to retain a diagnosis? What if we can’t? Does that take away the diagnosis? If we are able to work and interact with friends more often than not, does that mean our struggles and suffering at home at night alone are any less hard or debilitating? And we are a diagnosis by night and not by day?

I can appreciate that having a diagnosis can be very helpful to a professional, as this is often used as the starting point of what happens next, and where to send the patient next or what treatment to give them. However, I feel that this may be a little overestimation by professionals, and here’s why…

1. A diagnosis is only as effective as it can be applied to the patient. If the patient doesn’t exhibit all of the symptoms or even half of the symptoms of a suspected disorder then the patient may be dismissed for that particular diagnosis or even misdiagnosed altogether, hindering understanding and treatment.

2. Diagnosing a patient only on presenting symptoms at the time may exclude considering other disorders the patient could be struggling with simply because a specific symptom is not present in that moment.

Any illness, whether mental or physical, is not always a textbook case. In fact, I would venture to say that most illnesses rarely present as a textbook case. And it doesn’t mean that whatever is in front of you is all it will ever be. Illnesses are very fluid in how they can present. They are subject to a number of factors that can contribute to its severity, fluctuation, and length. Things can often change at the drop of a hat, and this is something a lot of professionals fail to take into account.

I think that there should be a slightly broader approach taken when discussing symptoms and their severity. Even taking a month or two of experience into consideration when asking the patient questions can go a long way to getting a better idea of what the patient is experiencing than going by a week or two. Or going by what symptoms are happening today.

3. A diagnosis should be treated as more of a guideline than a prognosis written in cement.

Illnesses are very fluid. They very rarely stay in one state for an extended period of time. Medical and mental health professionals have been trained to go by the book and anything that goes against the book is treated as either not applicable or a cue to consider a whole new diagnosis altogether. If it isn’t written in the textbook, I’m looking at you DSM, then it isn’t so.

This is hard not to hold against the professionals because this stuffs our illnesses, disorders, and issues, into very rigid, inflexible categories that may or may not always apply, and may even lead to more damage than help. To give the professionals some credit, they have to start somewhere. I just don’t think that’s where it should also end.

When I was hospitalized late last summer, I spent six weeks on the ward, and during that time I was given my BPD diagnosis. For me, at first, I was scared as hell. In part, because I knew very little about BPD and what little I did know was scary and unsettling. I found out that I was very misinformed and the stigma of it preceded me finally coming to an understanding of what BPD really was.

When I started to educate myself, with the help of my psychiatrist, I started to feel relieved; the symptoms, the urges, the actions, the behaviours, the history, all associated with BPD, finally started to shed some light on who I was and why I behaved, felt and thought the way I did. It was like having pieces of the puzzle start to fit and show me the big picture. I felt truly excited that I finally had a diagnosis that made sense and that fit.

But with the diagnosis, the understanding, and the relief, came great fear. Fear that the behaviours and symptoms that I didn’t exhibit meant that maybe I really didn’t have BPD. I had been diagnosed before, feeling understood and relieved, and it hadn’t stuck. Diagnoses that before had made sense at the start and then slowly fell apart because other stuff under the disorder didn’t add up, and so the bottom fell out and so did the diagnosis.

Then there was the stigma that came with BPD. The limited, misunderstood and vilified diagnosis of BPD that so many have come to take as gospel, including the medical and mental health profession. Those suffering with BPD were supposedly “too emotional”, “too needy”, “manipulative”, “too sensitive”, “too moody”, “unpredictable”, “irrational”, and emotionally unstable. Leading many to even give another name to the disorder, “Emotionally Unstable Personality Disorder”. A moniker which I personally take offence to as the disorder is a lot more than just having dysregulated emotions, and right away gives others an inaccurate picture of the situation. It is often assumed that Borderliners are notoriously difficult to treat and are frequently unable to obtain and hold professional help due to this “neediness” and their frequent suicide ideation.

I hadn’t even told anyone outside of my husband about my BPD diagnosis and I already felt excluded, misunderstood and ostracized. I already felt like a lost cause and I had only been diagnosed that week. I felt awful. I thought I was a lost cause. I was terrified that even my psychiatrist who had been the one to approach the BPD diagnosis in the first place would surely throw me to the curb now instead of enduring what would apparently be a long, trying road for her to try and treat me. Would she think that I was a lost cause too? Would she be put off by my disordered thoughts and emotions enough to not even want to try and help me? Would she feel exasperated if my thoughts turned suicidal and send me packing?

I was conflicted. On the one hand, I finally had a diagnosis that made more and more sense to me the more I learned about it. But on the other hand, I had a diagnosis that meant I might not be treatable. And not because BPD can’t be treated, but because a lot of professionals won’t treat BPD. I would apparently be a waste of time and resources that would be more effective on others with a more “favourable” diagnosis. What a more favourable diagnosis would even be I don’t know because I think any mental illness has its challenges when it comes to treatment.

Suddenly I was sad because I was confronted with a diagnosis that now felt like it defined me. It felt like my name melted away and was replaced by my disorder. I became a disorder to be treated, if my psychiatrist was up to it, and my behaviours and actions were now tainted by the symptom checklist. It was hard not to suddenly question everything. It was hard not to feel lost.

Was that action because of the disorder? Was that thought because of the disorder? What was me and what was the disorder? Were they separate? At what point was I influenced by my disorder? Where did my disorder end and I begin? What comes with getting a diagnosis? Fear, sadness, uncertainty, isolation, questions, relief, and hope, that’s what comes with getting a diagnosis.

When it comes to mental illness, a diagnosis can be the best thing that happens to you or it can be the worst thing that happens to you. It can even be both. It all depends on where you are and what’s going on for you at the time.

Overall, I think a diagnosis can be more helpful than hurtful because at the very least it can be a starting point. But I also think it needs to happen with the understanding, between the patient and their doctor, that there is more than just the textbook classification of the disorder. And to keep an open mind, that symptoms and illnesses are subject to change. That we are more than a diagnosis, and should be treated as such.

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Me and Love

So I learned something new about myself yesterday, I have an aversion to the word “love”.

It was the last few minutes of my appointment with my psychiatrist, and she was talking about love, and I stuck out my tongue and made that fart/splat sound to the reference she made. She asked me, as she usually does when I respond like that, what was making me respond that way. And I said the whole “love” thing, I’m just not sure about that.

I thought nothing of it. I already sort of knew I wasn’t a fan of sappy love crap. Like, whatever. My psychiatrist however, was new to this information about me, and asked why I might have a problem with “love”. I shrugged in response because I didn’t think it was a big deal. And I said as much.

Except I started thinking about love, and making random comments about love and how I felt about it, as she quietly listened and waited. And sure enough, it dawned me, I did have a problem with love. A big one.

This is one of the best things about treatment, those moments that just happen by accident. Some of the best insights can happen this way. And this one was no exception. Not only did I have a problem with love, I had a problem with the word too.

I thought of the last appointment I had with her and when I went to Chapters bookstore afterwards, I was looking for a journal, and a number of them and the word “love” on the cover, or love quotes, and I picked them off one-by-one, making faces at them, scowling at them, making the fart/splat sound, rolling my eyes and even getting irritated to the point of thinking, ‘my god does love have to be everywhere?

Well, son of a bitch. I really did have a problem with love.

What is that about?

Unfortunately, it was literally the last three minutes of my appointment so we weren’t able to further discuss it. She asked me to think about it for the next appointment and journal about it to explore what might be going on there. I’m kind of glad it happened this way because I’m actually curious now, and I’d like to think about it on my own. I appreciate my psychiatrists input for sure, but I wanted to see what I came up with first. What is my aversion to love about?

I’ve been thinking about it ever since my appointment. So far I’ve only noticed that I’m not a fan of thinking about it either. I’m guessing that’s because there’s some big stuff behind it that I’m probably afraid to deal with. Not much surprise there.

So the inquiry into my love aversion begins…

Dark Thoughts

Sometimes I have very dark thoughts. I don’t know how to explain them and out of sheer embarrassment I won’t go into details of them here. All I will say is that they are dark and they are scary.

I don’t know what makes them happen so I don’t know how to stop them or cope with them once they are there.

I worry about them and what they may become. I don’t dare talk about them for fear that I will be seen as a freak. Or worse.

I don’t know if they happen because of the BPD or if they are from depression or maybe I’m just so disordered that all my thoughts are just naturally messed up.

I am glad that they don’t happen often, and when they do they don’t last long. For the time they are here though, they terrify me.

My only wish is that if they are going to stick around, they never become more than a thought.

I hate them. I fear them. I pray they never become more.

The Unsettling Feeling of Calm

I wanted to share this because I’m curious to know if anyone else has experienced this. Or if it’s just me and I’m losing it. 

Today on my way to an appointment, I was on the bus and it was about halfway through my trip when I realized that I felt calm. It hit me quite suddenly as I was just looking out the window and thinking. Was I…calm? Was my body…calm? Wait a second, was calm? Really? Are you sure? Me? Calm? That can’t be right. Okay, what’s going on? 

So I scanned my body to look for anything that might be there, a flutter, some tension, anything to tell me that my body was in a state that wasn’t even close to calm. And as I reached my toes and still had not found anything, it started to sink in that I wasn’t really feeling anything at that moment. Say what? I wasn’t feeling anything? 

I thought maybe I was numb then. That made sense. I wasn’t feeling anything in my body because I was numb. But the body scan told me it wasn’t numbness because even when I’m numb I physically feel a certain way. There are still physical sensations that tell me I’m feeling numb. And this time there was nothing. Just…nothing. No anxiety. No tension. Nothing. My breathing was normal and my body was calm. 

What the crap was this?

I scanned my body again, looking for the slightest twinge or tension, thinking I needed to double-check this out because I couldn’t be just calm, could I? And again the scan told me there was nothing. My body was not in a state of anything. Was this what riding the bus with no anxiety looked like? Was this what an anxiety-less body felt like? Was this simply riding the bus? Was this what just taking a bus looks like? Was this what just taking a bus feels like? 

Well I don’t like it. 

Now don’t get me wrong, when I say I was calm I don’t mean that my mind was blank or quiet because it was neither. I don’t mean that by being calm I was not having a swarm of thoughts going through my mind because I did. In fact I was thinking about my life and my emotions when I realized how calm I was. I was not really relaxed, meditative, or even happy because I wasn’t. It was just…calm. 

For whatever reason, I was not tense or anxious or feeling like I would pass out or freak out. I was not worried that I might die or anything. The absence of the chaos I usually carry within me was very unsettling. It wasn’t long before I wondered if I should be freaking out. I mean this was not my usual feeling. This was not my usual state. This was not the way I normally take a bus. This was new, and weird, but suprisingly even when I thought of freaking out my body just stayed calm. For a moment I was unable to even stir myself into feeling anxious. I have no idea how. And I have no idea why. I just was. So this was calm? This was just sitting with myself? This was just being?

Interesting. 

I actually managed to stay calm for the next hour or so, and frankly I’m just stunned. I don’t know how it happened. I don’t know why it happened. I have no idea how I managed to stay calm in my body as my mind pondered life’s questions. But there it was. Me. Calm. 

Alrighty then. Good to know. 

I’ve decided not to analyze this to death because I have a feeling it will never be explained. I have a feeling that it actually doesn’t  matter why it happened. So I am going to accept it for what it was, a feeling of calm while going to an appointment. 

I’d like to say that I was able to stay there, in the calmness, but unfortunately my anxiety about not having anxiety managed to build my anxiety level, and within a couple of hours I was back up to a 7 or 8 on the anxiety level scale, and also had a slight panic attack on my way home from the appointment. 

On the plus side, I was super pleased that I had at least caught a glimpse of what a zero on the anxiety level looks like. It’s nice to know that it can happen, that it is possible, and that I can get there. I’d like to know why or how it had happened so I could harness it for the future but I know that is probably not possible. Some things can’t be harnessed like that. At least, not yet. 

As unsettling as it was to just be calm and not have anxiety and all the baggage that goes with me wherever I go, I’m really glad it happened because maybe it will happen again. And maybe it might even last longer. Or maybe I’ll never see it again. Who knows.  But at least knowing it’s possible is good. 

Has anyone else experienced this? I really hope it’s not just me. 

*TW* Like Ripping Off a Bandage

I just want start this off with a disclaimer here because I am well aware that how BPD manifests for any borderliner could be very different than how it manifests for me. As a rule Borderliners tend to be very high functioning for day-to-day activities however we aren’t always able to maintain that functionality for extended periods of time. It’s our personal lives behind closed doors that are a chaotic mess. And it is only a matter of time before one spills into the other and we are not so functioning anymore. This might not be how another person struggles with BPD, is this is how I struggle with BPD.

For me, I sometimes have to work to get to functioning. It’s not easy, and it can take me weeks or months to finally get to a baseline of just doing the best that I can. Which is a minimal level.

This usually involves a lot of meds having to be administered in order to get myself functioning. If I’m lucky it will involve therapy of some kind at the same time as taking the meds but until recently it was either one or the other. There was no balance. There was no equilibrium. I either could take the meds and just do my best not to fall backwards. There was no support, not the way I needed it. Or I had the support and the meds weren’t really doing it for me.

Doing the meds cocktail, for anyone struggling with mental health issues, or mental health disorders, knows that it can be an exhausting, tiring, and frustrating journey. And it is a journey. It can take months and years; dozens of medicines and dosages, mixing anti-psychotic with anti-depressant, uppers with downers, meds to get you to sleep, meds to keep you asleep, meds to allow you to think, meds that stop you from thinking. Finally finding the mix that works is daunting. It took me three decades and finally a diagnosis of BPD to get the mix that is currently working for me. Although because I’m still struggling, I am still developing the right mix for me. It’s a work in progress.

So I have to choose therapy or meds, if I’m lucky, I’ll get at least one. And it will help me. Because I usually end up back at the bottom of life, I also feel abandoned, rejected, alone, and angry.

Except the anger would be directed at myself. I was a failure for not being able to magically fix myself when I was broken. I was to blame for not having the support I needed. I was to blame that the drugs didn’t work. I was to blame that therapy didn’t work. I was to blame for everything in my life going so wrong that I would end up feeling suicidal. And suicidal was where I stayed until I either tried, or I was able to find my way out.

Having BPD is tough. Every day feels like a battle. Every interaction feels like a wound that starts out bandaged but within moments can be ripped off by either telling me I’m too sensitive, that I need to get over it, that I am being difficult, that I am causing trouble by not letting anything go, that I am making matters worse for myself, or if I feel abandoned or rejected, and just that fast the bandage would be ripped off and my wounds would be exposed, and I would be open to pain and hurt and suffering. Again.

I want to be able to keep the bandage on long enough so that I can heal. I want to be healed enough that it won’t feel like I’m exposed and vulnerable. I want to feel like I can take what someone says or does to me that doesn’t send me spiralling out of control into bad and dark places.

I am fighting to keep my bandage on right now because I’m terrified of having my wounds exposed.

Dear life, please give me time to heal.

*TW* Trying to Return to DBT

So the last several weeks have been hard for me. Last couple of months? Hmm. So more time has passed than I previously thought. I don’t really know if it’s my BPD, depression, or anxiety…actually that’s not true, I do know, it’s all of it. The whole mess of chaos and confusion that lives in my head and in my body, pinning me to the floor, or pushing me into a dark hole. One just egging the other on until I am a puddle on the floor.

The good news is, during this time I have been continuing to attend all of my weekly DBT Groups, and all of my weekly DBT Individual appointments. So I have a wealth of DBT information on backlog. I’ve wanted to start posting those again but I just didn’t have it in me. I thought I could squeeze them in but it didn’t work out that way.

Despite the backlog of posting any DBT skills, there were a few days the DBT stuff helped me with my stress, anxiety, and distress. Some days, I admit, DBT didn’t even enter my brain let alone my practice. And there were a few days I did think of it and it didn’t do squat. But there have been a few moments when it did help, a lot, and I think a lot of it can help others too. Especially the Distress Tolerance, which is unfortunately the most recent module taught, so it will be the last ones to be posted.

Either way, if it can help me, then it has a chance to help others too.

My goal is to now get back on track with posting the DBT stuff again, and in the midst of that, I am going to still try and climb my way back to my normal. “My normal”, for those of you wondering, is a place where I don’t wake up every day wanting to sink into a deep, dark place and be left completely alone. *TW* Maybe or maybe not, considering if I’ll wait for death, or if I’ll walk right towards it. And where every day feels like moving through tar, in body and mind.

I hope to get back on track within the next few days. Wish me luck 🙂

If Wishes Came True

When I was a little girl I used to pretend that I was an actress. I gave myself a stage name and I even had an imaginary manager, and secretary. I drew posters for my movies, and I even released some albums as a singer. And I would draw the album covers too. I would play for hours by myself as an actress slash singer in my room until it was time for bed. I didn’t even like stopping for dinner, or anything else. It was all about me and all the great things I could do. I would have loved to continue playing after it was time for bed but at the time I had to share a room with my brother and he really crimped my style.

But during the day, when my brother would go out, and my mom would be busy or sleeping, I spent hours, days, weeks, and months just playing my imaginary role. Sometimes I would bring in other imaginary people to play secondary roles, like friends, or boyfriends. It was very elaborate. Everyone had a role and a background. Not that I knew what to do with a boyfriend at that age. I imagined that basically he was just the guy there, and that eventually we would end up married and have kids. He played a really small role. Mostly I just had lots of friends, and lots of admirers, and lots of fans. In my imaginary world, everyone loved me. And everyone wanted to be friends with me.

I believed that I was special. I believed that there was just something about me that everyone liked, and people would gravitate towards me, and they would all want to be in my life. I was like this shining force that people loved. I was the person they turned to when they needed a friend, and I was a great friend. I was the one they would always want to call. I was the one they all wanted to spend time with. My time was so valuable to everyone that it was like being mobbed by fans to find time for all my imaginary friends.

It was a great feeling, to be loved, and admired. I felt like I was this great, special person. I was this important person to all these other people. I was one person they thought of often. whatever party, or event, birthday, or celebration, it didn’t matter, my “friends” always made sure to invite me. It wasn’t a party without me. My imaginary friends would be heartbroken when I had to say no to their invitations. They would beg and plead for me to be there. Me being there was what would make it great. And that feeling, it was so nice. I never wanted that feeling to end.

But then, one day, it did. Because I grew up. We moved, and I got my own room, which was great for helping to build the imaginary world, but slowly my imaginary world started to change. Real life filtered in a lot and it was getting harder and harder to maintain my magnificent world.

And then one day I stopped believing that I was special.

I don’t remember what happened, or the moment it changed, but around the age of 13 or 14 my world turned from sparkly to dark. It went from full of friends to no one. I went from being the important one, to being the forgotten one. It went from everyone likes me, to people not seeing me at all. Not only did I not see myself as special anymore, but now I was starting to believe I was never special in the first place at all, and that I wasn’t worthy of living.

I wish I could pinpoint where it crashed. Or why. Maybe then I could re-trace my way back to feeling special. Maybe then I could have some friends back. Maybe then I would be seen and I would be important, to someone. But I have a sinking feeling that path is long gone, never to be found again. I miss the days when I felt special, and that everyone liked me, and everyone wanted to be my friend.

Now I believe the total opposite of every person I know. Whether they are already in my life or not. That no one likes me. No one thinks of me as important. I am not special. Sometimes I feel like a fool for ever having believed it in the first place. I am not special.

I wish I was though.