diagnoses and disclosure - my take on transparency

How do you handle a diagnosis?

Is it a label? Is it a tool? Is it harmful? Is it helpful? Maybe both?

Deciding how to feel about a diagnosis of a neurological (or any medical) condition can be difficult. For some, getting a diagnosis can mean an end to uncertainty, answers to questions, and an ability to succinctly communicate their situation to other people. To others a diagnosis means being branded as “different”, “weird”, or “less than”. For this reason, everyone handles theirs a little differently and with varying levels of transparency.

I’ve always taken the route of the utmost honesty surrounding my diagnoses. This is partially due to my early history of visibly severe symptoms - it’s difficult to pretend there’s nothing going on when other people can clearly see you ticcing, sometimes dozens of times a minute. But although my logic began there, over time my reasons for transparency transformed entirely. There are lots of days when I could probably hide my tics if I wanted to, but I don’t.

Why?

I personally believe that owning my diagnosis removes its power to elicit shame. If I display no attempt to hide who I am, then it erases any power that others may have had over me to point to anything about my diagnosis making me “less than”. So, it helps me in my own life to navigate complicated social dynamics surrounding attitudes about neurodiversity and disability. But more than this, I’ve realized that a collective motion to take ownership over neurological diagnoses is incredibly powerful to end the stigma which can surround being different.

That being said, not everyone is in a place to do this, and that’s 100% okay.

My journey with Tourette Syndrome and all that comes with it has taken place over the course of a lifetime. While some parts of my journey are ongoing, or just beginning, this particular aspect of my story is told from the perspective of the end with the benefit of hindsight’s perfect vision. I am comfortable with my diagnosis now, but I wasn’t always - acceptance of my TS was a years-long process with all sorts of ups and downs along the way.

If you’re trying to figure out how to handle your own diagnosis, it’s important to keep in mind that the confidence and transparency you might see from others wasn’t built in a day. Start small. If you’re afraid of sharing with everyone, try telling just a close friend. If you feel confident doing this, tell two. The act of disclosure within safe spheres can help build up the courage it takes to tell people whose reactions are not easily anticipated, and having a network of supportive individuals is invaluable in building the resilience it takes to handle instances where strangers might be unkind.

But if you’re not ready to tell, that’s alright. It’s okay to not feel comfortable sharing yet - or at all. For every person who goes public with their diagnosis, there’s likely another who keeps it private. That’s okay too.

Ultimately, my goal is to raise enough awareness that the burden is lifted from the shoulders of others who may not feel that that’s a role they want to take on. If neurodiversity is de-stigmatized by those who practice transparency, that means that it’s de-stigmatized for everyone.

But as you make your choice: above all, do what makes you feel the most comfortable and empowered. The most important thing is to just be honestly and authentically you, whatever that looks like.