Journeys in Mental Health: It’s OK to change your label if you choose to have one.

In the latest blog from PLOS Mental Health‘s ‘Journeys in Mental Health’ series, our guest contributor discusses how mental health diagnoses can commonly change over time and how that should not be stigmatized.

We all know that different mental health conditions have overlapping symptoms and making an accurate diagnosis can be tricky for many reasons. When I talk to people about getting a diagnosis for their mental health condition, many feel that giving something a label is not always helpful and that it over-medicalises their experience or comes with stigma. To some extent I agree. However, in some instances, an accurate diagnosis can  help inform treatments and identify appropriate sources of support. For some, a label can also help with self-acceptance. We also know that different levels of stigma are associated with different mental health conditions. But this is not what this blog is about. Here, I wanted to share my experience with the stigma of having an inaccurate and changing diagnosis and try to highlight that it is OK, and often expected, that a mental health diagnosis can change over time. Indeed, it is often the case that, regardless of the cause, and regardless of the level of understanding of mental health professionals, our ‘dominant’ symptoms can change over time and therefore so can our diagnosis. How do we know when we have reached the right one? Does it matter? And what do we do with a diagnosis even if it may not be accurate?

Over the course of about 10 years, I have had 5 different diagnoses and have made the choice to be open about them with some of the people in my life. For me, this was important and comfortable but I fully appreciate that many would prefer not to do this, or are unable to share their diagnosis. So in this respect, I know I am fortunate to have this relative safety.  Although I found that many were supportive and open to learning more about my symptoms and current diagnosis, what I did experience was that, over time, more and more people started to question whether I was lying or whether I didn’t understand what I was talking about. How can I have had so many diagnoses in such a short time? How do I know which one, if any, is correct? Then what happens if my diagnosis changes again? Should I just keep quiet about it in case more people don’t believe me? Should I trust the new diagnosis? How many second opinions do I need?

I don’t have the answers to the above questions. But I think it is really important to normalise the fact that, due to the nature of mental health conditions and due to current gaps in understanding, it’s perfectly legitimate, and not something to be ashamed of, that a diagnosis might change at different times and can even depend on the mental health professional/service. Is this a good thing for the individual involved? No, probably not. It means that different therapies or treatment approaches are prioritised and these are inevitably not always going to be the most appropriate. In some cases, they can make the situation worse. But I think we really need to spend some time openly discussing how common misdiagnosis is and to learn as much as we can from it. There should not be a stigma associated with mental health conditions and there should also be no stigma associated with changes or inconsistencies in diagnosis. The change is merely a reflection of those with mental health conditions and mental health professionals trying their best to understand and navigate experiences that are still largely misunderstood and highly variable. We need to get conversations like this going and that is the aim of my account here.

…I think we really need to spend some time openly discussing how common misdiagnosis is and to learn as much as we can from it…

 *The contents of this blog reflect only the personal experience and opinion of the author. This does not represent any kind of professional advice or necessarily the opinions of PLOS or PLOS Mental Health. PLOS Mental Health remains grateful to all contributors to this series and welcomes submissions to our Lived Experience & Advocacy Section

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