Embrace the big feelings that come with not knowing: undiagnosed

There is romance

in the way we hold hands

as we walk back to the car

from a multi-hour

medical exam

that later said:

all

is

within

the norm.

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You know that feeling: the one where it feels like you're slowly going mad because you know there must be something wrong with you except, all the tests come back "normal". The doctor says, "that's good. It's good news." Is it, though?

I got asked "Have you had a recent stressor in the past year? Did someone pass away?" Yes, I have had stressors in the past year, and it's that my body has been acting like it shouldn't. Something is amiss. So, with all due respect, I'm not here because: "stress". I'm here because I'm undiagnosed.

I'm not going to go into why I'm unhappy my diagnostic tests come back normal, or why it's frustrating that there's a real possibility my health concerns will be pawned off to "stress". I'm just going to say: I'd rather I have a curable, known condition than whatever this purgatory I'm living in right now is.

I recently spoke with someone who suffered with Lyme disease for years and no one could diagnose it. Lyme is notoriously hard to diagnose. They had to live through years of debilitating symptoms only to be told there was nothing wrong with them and they might want to look into psychiatric treatment (read "it's all in your head").

Going back to the fight and asking "why?" takes an enormous amount of mental fortitude and energy. You have to

• advocate for yourself with medical providers: yes, do the test. I want to know.

• find new ones if the ones you have can't find the answers

• research your condition: what does science say?

• talk to other people with the same constellation of symptoms as you.

• collect data on what makes you feel better, or worse; what you're eating; do you have allergies?

• explore your family history: what was life like for you a my age grandma? You've been blind in one eye this whole time?! How did no one know this?!

And, also manage to live your life while doing all these things because life, as it should, goes on.

So, to my Lyme sufferer, who did all of the above, and flew to another country to get the right treatment and cured themself, I say: congratulations!

---

Today, I'm frustrated.

I'm trying not to be angry. I'm trying to be patient, with myself and with the world. I'm trying not to feel small or somehow lesser, or envious, or bitter, or angry because I cannot do the things I want to do. But some of those big feelings fall through the cracks anyway. And (insert deep breath) it's ok. Like I tell my kids, big feelings are ok to feel. Big feelings exist and we let them come, we comfort them and we let them pass. I can help my kids do it. I need to do it for myself.

But how lucky am I that my partner knows how to help me like we help our kids? And that I have an emotional support system that caters to the various moods of my body? Yes, there is something I have that not everyone, able-bodied or otherwise, can claim.

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