Josh, neurodivergent: Before my diagnosis, before I was connected with a therapist, or even had a clue what was going on, a bad day was night and day different from what it is now.
When I was doing well and was insulated in my bubble, I was great. My meals, study time, workouts, and time to relax were identical, and I allowed two hours on Thursdays for potential social events. It was a thin line I flourished in. But when I wasn’t, it was really, really bad. Before I had the correct diagnosis and resources I needed, a bad day was akin to a foot in the grave. I had been treated off and on my entire life for depression, bipolar briefly, PTSD, and various personality disorders - but nothing helped (these were incorrect diagnoses) and I was committed a few times for my safety.
I think what finally really got me to dive headfirst into getting better was that one day, on the way home in the car, I remember thinking of at least a dozen convenient ways to kill myself - and it haunted me. I got to the point that these thoughts were overwhelming and I just couldn’t shake them. I knew that I was kind of at a crossroads. Between my ears can be a really, really dark place. But that was back then, and thankfully that's not what I have experienced for a while.
My entire perspective changed when I was told I'm autistic. And from that day forward things looked brighter and brighter. Testing and therapy and diagnosis were a turning point. All of these things helped me to navigate away from the triggers that were setting me off.
Now, a bad day is significantly different. A bad day is sensitivity to noise and needing to be completely alone for a while. Maybe that lasts for a few days, but ot never comes even remotely close to the dark thoughts I’d had before. In fact, there are no dark thoughts at all, now.
Before, I needed a way out of the life I was trapped in. Now, I live the life I need, I guess. And I am very aware and thankful that change is the result of amazingly loving and supportive people in my life. So when people ask why I felt diagnosis was necessary, that is what I tell them.
What we wish we'd known: Bad days don't have to be quite so bad. There are things that can be done to improve your environment and lessen the toll the day takes on you.
Kelly, neurotypical: When Josh's health began to deteriorate, prior to his diagnosis, his bad days were really bad - and he really wasn't having any good days. Before he felt able to open up to me about his depression and suicidal ideation (and long before we embarked upon the road to diagnosis), all I knew was that we were growing apart - to say the least.
I remember complaining often that I felt like we were becoming nothing more than roommates. Some days it seemed like Josh wanted nothing to do with me, and other days it seemed like he was flat out resentful of my presence. He really only wanted to be around the dogs. In response, I became sullen and hostile, which, in turn, angered Josh, and so on. I was completely fixated on figuring out what was happening to us, and all too frequently, I came to the conclusion that I had done something wrong (even though I had no idea what that could have been). I became jumpy and depressed and questioned just about everything. I pushed Josh to explain himself and was verbally very combative..... which, obviously, didn't help at all - especially because Josh didn't have any idea what was going on, either.
Josh's angel-dog, Mia, who got him through many bad days.
Looking back now, it feels like a different lifetime. The learning process has been rather painful, but we've both learned how to pre-empt bad days and how to deal with them when they arrive.
Josh has had to learn how to tell me what he needs. This usually means that he tells me that he needs quiet time or alone time, which means he's overstimulated and needs sensory detox.
I have had to learn to prioritize Josh's needs when he verbalizes them. Yes, we all have needs, and he prioritizes me, too - but when he needs sensory detox, it's a critical need that must be addressed immediately.
I've had to learn how to not take it personally, and frankly, not make it about me... because it's not.
And Josh has had to learn how to give me the attention, validation, and affection I need once he's back on stable ground.
I've had to learn not to resent Josh for his needs. It helps when I liken his bad days to my migraine days.. everything has to take a backseat to my needs at that moment, and there's nothing I can do about it.
Bad days now are nothing like they once were, and they don't wreak the havoc on me that they once did. We can pretty much both sense a bad day coming, and we are both invested in learning how to take care of each other (and ourselves). I focus on my gratitude that Josh works as hard as he does to figure this all out and I give myself grace when I say or do the wrong thing. and I'm much better at telling Josh what I need so that he can take care of me too. We have more to learn, but we are on the right track.
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