There are days when I can’t get out of bed for more than a few minutes at a time. Not figuratively, like in that, “Ugh, Mondays,” kinda way. I mean literally. Standing long enough to make coffee can feel like a risk calculation. And forget taking a shower, because fuck, it’s exhausting. My body has its own rules now, and they often change without notice. I hate it here.

A few years back, I found out I had high grade lesions on my cervix, and that started a 6 year circus of colposcopies every 3-6 months, and the never-ending fear that the stupid cells someone gifted me would kill me. (Joke’s on him, I’m still breathing.) Along the way, they discovered I’ve got massive fibroids, so I was eventually scheduled for a hysterectomy, because my Dexter-crime-scene periods are horrific. But that surgery got canceled when I busted the surgeon for illegal billing practices, so here I am, fifty years old and still fertile and bloody as fuck. That’s a story for another day.

Right when the pandemic shook the world up, I found out I’ve also got ADHD. Well, I mean, I was officially diagnosed after having a mental breakdown, and then later found out my parents had known since I was a kid, but again, that’s a story for another time.

Then I was diagnosed with fibromyalgia, then inflammatory arthritis, then anemia of chronic disease, then Primary Biliary Cholangitis, then depression, and oh yeah, the particular chaos that comes with perimenopause. Let’s not forget hEDS.

What a fucking joke. All of it. I gotta admit, though, it’s kinda funny how right my former FIL was when he labelled me a “genetic dice roll” when my kids’ father and I said we weren’t going to have genetic testing done while I was pregnant. Being adopted and without a family health history never seemed like that big a deal to me, and I was so insulted when he said that. But man, I hope he reads my blog, because maybe he’ll get some smug satisfaction out of knowing he was right.

Chronic illness is utter bullshit that most people should be thankful they never have to endure. Pain compounds fatigue, fatigue worsens executive dysfunction, executive dysfunction fuels shame, and depression seeps into the cracks between symptoms turning everything into a sickening shade of grey. Hormones shift and suddenly the coping strategies that used to work just don’t anymore.

hEDS means my body is structurally unreliable. Fibromyalgia serves up constant pain, and a nervous system that treats the entire world like a threat. Arthritis adds inflammation that makes movement feel impossible some days. ADHD means planning, starting, switching, and remembering all cost more than I can often afford. Depression whispers underneath it all, always persistent. Anemia means all this is magnified. And PBC sits there quietly but ominously. It’s a chronic autoimmune liver disease with no cure. Medication can slow progression, and for many people it significantly improves life expectancy, but for some it doesn’t. Nobody can tell me which one I’ll be, so there’s constant monitoring. Everything I’ve been diagnosed with shares one bottom line: utter exhaustion. But you know what has no time for being tired? Life.

I lost a stable job, so I rely on freelancing to survive, and that requires hustle. I parent teenagers with their own lists of needs that take up a whole lotta my time. I manage my house, my problems, and my life all on my own. My parents live 3000kms away, and my partner lives the next town over. Compounding it all, there’s legal garbage I have to trudge through to fight for what’s fair for my kids and me.

It’s all constant stress, anxiety, worry, and work. Some days I feel like I’m barely holding life together, and some (ok, most) days I’m convinced I’m actively failing at all of it.

It’s impossible to talk about all this without talking about guilt, too. I feel so much guilt for cancelling, guilt for being unreliable, guilt for not being self-sufficient enough, guilt for missing important milestones, guilt for the friendships I can no longer maintain, guilt for the days when my kids see me resting instead of doing.

I’ve lost so many friendships because I’m a ghost, because explaining takes too much energy, because disappearing is easier than being half-present, because chronic illness is inconvenient and unpredictable and doesn’t fit neatly into social expectations. So I scroll through their photos, liking them to let them know I still care, but being too isolated and tired to be an active part of their lives anymore.

Parenting doesn’t pause for any of this, but I’m thankful my shit hit the fan once my kids were old enough to at least cobble together their own meals. But teens still need rides, food, money, emotional presence, guidance, and stability. They have their own challenges, their own nervous systems, their own anxieties, identities, and pressures. They’re growing up in a world that feels increasingly sharp and unforgiving, and they need to know someone is paying attention. So that’s me. I’m still paying attention.

Some days the fear is not about my body, it’s about what my limits might cost my kids. I worry that my exhaustion spills outward and my capacity caps their experiences. Is this how they’ll remember me? As a shell of the vibrant mother I was just a few years ago? So the guilt piles on, heavy and relentless.

But they surprise me. They notice, they adjust, they show empathy without being asked, and they learn that strength doesn’t always look like pushing through. And I guess these are valuable life lessons, too.

Chronic illness isn’t just one thing, it’s the way everything intersects. Work. Parenting. Money. Aging. Mental health. Relationships. Identity. It requires constant triage, and every day is a calculation of what matters most, what can wait, and what simply won’t happen.

Some days the win is getting everyone fed.
Some days the win is answering a text message.
Some days the win is just staying upright.
Some days the win is taking a shower.
Some days the win is letting go of the idea that there has to even be a win.

There’s also a lot of fear. I worry about progression, about life expectancy, about sustainability, about what happens if things change faster than I can adapt.

But this isn’t my whole story.

There are friends who show up quietly, and check in without demands. I’m so grateful for the people who don’t take cancellations personally, and who understand that my silence isn’t rejection. I’m lucky to have a family that’s patient and thoughtful, and that they listen without trying to fix me. I’m glad they understand that rest isn’t laziness. There are the clients who trust me, and value the human being on the other end of the work.

There is still happiness in this, too.

There’s joy in small moments, like morning coffee with my son who makes me laugh so hard I can hardly breathe. Or when my daughter curls up next to me in bed to share a collection of TikToks she’s curated for me. Or in the, “Ok, babe, feel better soon,” my partner replies when I cancel another plan because my body needs to sleep.

I think a lot about the difference between becoming these diagnoses and being with them.

Becoming means letting them swallow my identity, flatten all possibility, and dictate my worth. Being with them means acknowledging reality without surrendering my sense of self. Yep, it means grieving what’s gone, but it’s not helpful to think that nothing good remains. I remind myself constantly that it’s ok to let life be different without deciding it’s over.

I’m definitely not inspirational. I’m not over here fighting some righteous battle. I’m certainly not brave about it.

I’m tired. I’m scared. I’m frustrated. I’m fucking angry.

But I’m still here. And despite everything, that still counts, right?