Today’s musings are for anyone who has gotten news of a diagnosis. Perhaps it’s for someone for whom you’re caretaking. Like a child with ADHD or autism, a hearing impairment or epilepsy. Or an adult with dementia or cancer. Or perhaps you, yourself, have been diagnosed with something.
We’ve had an avalanche of diagnoses in my family this past year – all the people, it seems, with all the things. Just when we thought the boulders stopped falling, we’d look up and find another rock pummeling toward us at high speed. My guess is if you live in the panini generation, you’ve had this experience, too.
Depending on what type of diagnosis we’re talking about, I’ve found that a whole smorgasbord of emotions usually accompanies its arrival. There’s confusion and the unknown, but sometimes relief at having a name for a particular challenge. There may be frustration at how long it took to know what the problem was. Or agony when experts disagree or change their minds. Then there’s fear and grief and maybe denial. But also, perhaps, hope and progress.
One day a few months ago, I was standing in the back of a dark, music-thumping bowling alley talking to a mom friend about needing to find a specialist. I was lamenting the immense amount of work it was taking to figure out who the right experts are to go to for what issues. And my friend reminded me that at least when it comes to a chronic condition, the initial learning curve can be the most logistically intense part. After that, things can and do smooth out a bit. At least for a while. My message to you today is an attempt to amplify my friend’s sage advice.
Two Reminders for When You Get a Diagnosis
Reminder #1: Yes, the Learning Curve is Huge, and the Mental Load Weighs a Ton.
It helped me so much to hear my friend acknowledge the steep learning curve that comes with getting a diagnosis for something you don’t know much about. There are alphabet soups of acronyms, new languages to learn, medications to study up on, and completely new worlds and communities to discover.
This reminder is me saying: you are not losing your mind when you feel like your head might explode.
This stuff is HARD, and it’s a full-time job of its own to learn and navigate!! For various different diagnoses, I’ve gained a lot of knowledge by listening to podcasts, joining support groups, finding relevant Facebook groups, and talking to any friend-of-a-friend-of-a-friend who has had experience with something similar. (This falls in the category of asking for help and saying yes when people offer.)
All of this research and learning takes time and energy, though. Energy you don’t have, I know, while you’re also trying to cope with the situation itself. And to care for your loved one and your own health. It takes time away from other things, like work and travel and even normal evening or weekend activities. If it feels all-consuming, I’m here to commiserate with you and say quite simply: it is.
Reminder #2: The Learning Curve Tapers Off, and You’ll Find a New Rhythm.
The other thing my friend said was equally helpful. In addition to validating how much of a load all this learning and navigating is to carry, she reminded me that it doesn’t stay this heavy forever. That day in the bowling alley, I didn’t believe her. I wanted to. Desperately. But I felt stuck in an “it’s going to be like this for the rest of our lives” doomsday mindset.
Now, a few months later, a few more miles down the path of educating myself, I see what she was talking about. Yes, I’ll still listen to a podcast here or there. Yes, I’ll still take a walk to talk with someone about their experiences. But it’s not an all-consuming, drinking from the fire hose event anymore. I can now speak new acronym languages with some fluency. We’ve got our experts lined up and appointments on the calendar. And we feel more able to navigate the unexpected when it arises.
Am I still reeling in some ways from the months when the learning curve was so steep and the emotional toll so crushing? Yes. But do I have more space now for some of the other things I used to enjoy? Yes to that, too.
If you’re in the thick of navigating a new (or newish) diagnosis for yourself or for someone you love, may this blog post be your permission slip to put down other loads for a while, while you learn both to carry and to share the weight of this new one.
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