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.