Living in the In-Between: Navigating Chronic Illness & the Unknown
I've now been enduring the worst flare of my undiagnosed chronic illness for two months. My body continues to feel like it’s deteriorating. The simplest tasks I once did without a second thought - showering, brushing my teeth, sitting up to work on my computer - now cause me pain. When I wear makeup and do my hair, I can look normal (see the photo attached… normal-looking, right? I took that last night and today I am bedridden and in pain lol). I can act normal, pretend I’m fine, put up a front on social media. But the reality behind the scenes is far from that.
Understanding Chronic Illness
Before this flare, I - like many people - didn’t fully understand chronic illness. I’ve had milder flares for years, but I always brushed them off, assuming they were just part of life, attributing worsening symptoms to simply aging. When I heard about others struggling with chronic conditions, it felt like a distant concept. Something I empathized with but didn’t truly grasp. I do not wish for anyone to experience chronic illness just to understand it, but I want to put words to this experience in the hopes that it bridges the gap for those who haven't lived it.
A Life That Feels Like A Different Lifetime
Two months ago, my life looked drastically different. I was working 4 jobs, regularly seeing friends and family, and rock climbing for fun. I felt strong and capable.
Now? I find myself barely able to leave the house. My capacity for “normal” activities has plummeted. I’ve had to cut down to 2 jobs and will soon transition out of another. My rock climbing membership is on hold for the foreseeable future. My body fucking hurts, and it’s terrifying to feel this decline with no clear answers.
What To Say (And What Not To Say)
I’ve noticed that many people don’t know how to talk about chronic illness - or even what to say to someone going through it. And to be clear, I was in the exact same position before this. I don’t blame anyone for not knowing, because how could they?
But here’s something that has stood out:
I’ve received a lot of well-intentioned “Get well soon!” messages, which, while kind, don’t quite land when you have an illness with no end date. Chronic illness doesn’t come with a one-week recovery period like a cold or flu. You wake up every day hoping for a break in symptoms, and when that break doesn’t come, you feel hopeless. So hearing “I hope you feel better soon!” can actually feel really discouraging. (ALSO to be completely fair, I’m not sure I’ve described my illness as a chronic illness in every interaction I’ve been having so I’m not sure they knew.)
If you want to offer support but aren’t sure what to say, here are a few phrases I personally prefer:
“I hope you get some relief.”
“Wishing you good rest.”
“I hope things improve, even just a little.”
“I hope your baseline improves.”
Small shifts in language can make a big difference.
How To Actually Help Someone With Chronic Illness
Another common phrase I hear is “Let me know if you need anything!” Again, said with the best of intentions, but when you’re in the middle of a debilitating flare, you often don’t even know what you need. A working body, perhaps?
The most helpful things people have done for me during this flare have been simple but impactful:
Offering to grab groceries
Watching a movie with me
Checking in and genuinely listening
Asking specific questions about how I’m feeling
Offering to hang at whatever capacity I can handle
If you’re unsure what to offer, just ask. Something like “Would you like some company, even if we just sit and watch a movie?” can go a long way.
Recovering, One Day at a Time
I recently had to intentionally trigger a reaction by eating a food my body can’t tolerate - all for the sake of a medical test. Now that the test is over, I’m deep in the aftermath, trying to regain some sense of stability. It’s been a brutal process of things getting worse before (hopefully) getting better. But this morning, I’m making an effort to hold onto hope. Because right now, hope is all I have.
It’s been less than a week since the procedure, so I know I have at least a couple more weeks of recovery ahead. Until then, you can find me lying horizontal, scrolling for new recipes, window shopping for a future apartment, or writing blogs like this LMFAO.
If you’ve read this far, thank you. And if you’re going through something similar, I see you. One of the few silver linings in this experience has been connecting with others who also have chronic illnesses. There’s a certain comfort in being able to vent, commiserate, and validate each other’s experiences - because when you get it, you get it. Wish we didn’t have to, but here we are. You’re not alone.
XOXO
-Irene