This post first appeared on Mental Health @Home in Ashleyleia’s Emerging Blogger series.
Many thanks to Ashley for hosting me!
Diagnoses are a contentious topic. Logistically, they’re important for clinicians and insurance companies who need proof of your conditions. But for the individual, they come with pros and cons. I carry the well-known diagnosis of Major Depressive Disorder and the less well-known diagnosis of Sensory Processing Disorder. The effects of the diagnoses themselves feel very different to me, and I’ve spent some time reflecting on why.
Well-Known vs Little-Known
A diagnosis of Major Depressive Disorder made me feel much less alone in my suffering. Depression is astoundingly common and increasingly talked about. Stigma remains, to be sure, but awareness surrounding depression is thankfully improving. I can be pretty sure that when I tell someone that I have depression, they’ll know what I’m talking about. The same cannot be said for Sensory Processing Disorder.
Insecurity in a Diagnosis
Having a diagnosis of MDD, maybe more than making me feel less alone, makes me feel understood. Simply saying the word “depression” makes most people, I think, picture the same constellation of symptoms: low mood, lethargy, loss of interest, etc.. This is not to say that I haven’t encountered stigma or innocent ignorance- I have. But when I tell someone that I have depression and they tell me that their brother or friend or significant other has depression, too, it connects us for a moment, and I know that on some level, they know what I’m going through.
This is not generally the case for my diagnosis of Sensory Processing Disorder, at least in my own lived experience. A person with SPD has difficulty processing the information that comes in through their senses, including the usual five (touch, sight, sound, smell, taste) as well as the less well-known senses of proprioception (where your body is in space) and interoception (internal body sensations like hunger). SPD can make you over-sensitive or under-sensitive to these stimuli. I’m over-sensitive to most, just plain bad at proprioception, and relatively unaffected when it comes to taste. Sensory Processing Disorder is overwhelmingly common among people who have Autism Spectrum Disorder, but you don’t have to have ASD to have SPD. They are separate disorders that have a TON of overlap. Despite the growing body of literature from occupational therapists, scientists, and doctors, SPD is not included in the DSM V. It is, however, its own diagnosis in the ICD 10. This discrepancy is what throws me off. I know that SPD is real. And yet, when I try to explain to someone what it is and how it affects me, I flounder. It’s challenging to describe how I’m affected by a diagnosis that not everyone agrees upon. It leaves me feeling vaguely defensive, or like I’m grasping at straws to explain my symptoms. In this sense, the label of SPD does not make me feel secure in my experience of the disorder.
Feeling Alone with SPD
While it is incredibly validating and relieving to have an explanation for symptoms that aren’t frequently talked about, the very fact that it’s not often discussed makes for an isolating diagnosis. I feel much more uncomfortable when I have to explain SPD than I do while explaining MDD. Once you grow up and leave behind the allowances of childhood, you’re expected to conform to a lot of social and institutional rules. I think this is why kids who have SPD grow up to be adults who hide their symptoms with willpower. They put themselves into situations that cause them distress because it seems like they “should” be able to. The problem here is not that you might push yourself to do uncomfortable things – that’s how we grow. The problem is that people with SPD often hide their discomfort and end up feeling alone and wrong for feeling how they do. It also leads to overstimulation and meltdowns, chronic anxiety, and exhaustion. Ultimately, I am so glad that I know about my SPD, not just because it explains all those sensory symptoms that make me think “why can’t I be like other people?”, but because it offers me room to advocate for others who feel alone in this diagnosis, too.
How a Diagnosis Can Hurt
For me, whether the diagnosis is well-known or not, simply having a name for what I’m going through is incredibly helpful, and I believe outweighs the downsides of having a label. That said, there are some potential dangers of diagnoses.
Mental Health and Identity
I’ve heard lots of discourse about the risk that you might allow diagnoses to seep into your identity until there’s no room for anything else. I enjoy writing about mental health, and at the moment, a lot of my focus is placed on managing my depression. Our experiences shape us, so it’s natural that I find parts of my identity rooted in depression and Sensory Processing Disorder, but I know that I am a whole person without them.
Is a Diagnosis Confining?
The risk that I don’t hear much about when discussing diagnoses is the ease with which a label can trap you in a definition. It’s subtle sometimes, but having a diagnosis of depression can make you perceive even mundane things as attributable to your disorder. For instance, I recently read a book for the first time in a long time, a hobby I abandoned when depression settled in again. The book was humorous, but I didn’t laugh out loud or even pause to appreciate the jokes. At first, I thought it must be because I’m still depressed. I didn’t even consider the possibility that maybe the book just wasn’t that funny. Feeling confined within my diagnosis, the sub-par experience of reading that book became a product of my depression.
A new diagnosis can, understandably, push you to look for information online. Reading case studies and statistics, while informative, might be discouraging. I think it’s very easy to slip into a set of criteria and forecasted outcomes because a diagnosis feels official. It’s easy to forget that a diagnosis is an explanation of symptoms, not a set of imposed rules. Not only is this likely to feel suffocating- like a diagnosis of depression means that any end to an episode will inevitably be followed by another episode (something I struggle with all the time)- but it makes any attempt to counteract it feel futile. I constantly need to remind myself that a diagnosis does not confiscate my agency over my life.
There is Always a Choice
Even within a diagnosis with symptoms outside of your control, there is always a choice. You can always take action, be it reaching out for help or making the choice to take your medications. I take solace in the fact that I’m not alone in my diagnoses, even if it sometimes feels that I am. At the same time, I work to recognize that I am an individual with my own course through life and my own opportunities to fight.