Chronic Illness, Reading, and Building a Life Bigger Than Pain
July is Chronic Illness Awareness Month, and if you've ever wondered how I manage to read 100+ books a year while living in a body that occasionally behaves like it's haunted...this one's for you
Hi. Welcome. Grab a cozy drink. And snuggle up because this ended up being a bit on the long side (and just a tiny bit swear-y)…
For those who are newer around here, I live with Ehlers-Danlos Syndrome, POTS, MCAS, chronic pain, autism (and most of the other neurodivergent diagnoses, too, because those fuckers are a package deal).
I also recently survived what can only be described as an Olympic-level perimenopause experience because I can’t do any type of estrogen-based HRT and am allergic to progesterone. It’s a lot.
Most days I wake up feeling pretty good - if I’m keeping up with my self-care and treating this body like the precious, temperamental diva that she is.
Other days, my joints choose to no longer participate in a functional way with the rest of my body.
Sometimes my nervous system throws a full-blown shit fit before I’ve even had my morning cup of tea (can’t do coffee because the caffeine will literally make my brain explode).
The reality is that chronic illness isn’t just about pain.
It’s grief, unpredictability (which really angers the ‘tism), and discovering with alarming frequency that your body has opinions your brain wasn’t consulted on.
It’s also figuring out how to build a joyful life anyway. That’s the part I don’t think we talk about enough.
My goal has never been to become pain-free. It’s to build a life that’s bigger than my pain and my challenges. Reading has become one of the biggest pieces of that.
People sometimes assume I read so much because I have endless free time. I promise you, that’s not it! I read because it’s one of the few activities I can almost always do.
When my joints won’t cooperate, I can read.
When I’m stuck on the couch or in bed because I don’t have the energy to do the things I want to be doing, I can always manage an audiobook.
When my body needs to rest, but my autistic, hyperlexic squirrel brain refuses to sit quietly, books give it a restorative, joyful, and comforting place to go.
Reading isn’t just entertainment or a distraction for me.
It’s regulation, companionship, and self-care. And we aren’t even talking about the nervous system reset that reading smut can give you (that’s a whole other post!).
And yes, sometimes it is a distraction. I prefer to look at it as hope, though! It’s simply giving my brain something more interesting to think about than whatever nonsense my connective tissue has cooked up that day.
Audiobooks deserve their own standing ovation here, too.
There have been countless days when I couldn’t do much of anything except lie still and listen to someone tell me a story. Those hours would have felt infinitely longer without books whispering in my ear while my body sorted itself out.
Stories have gotten me through more difficult days than I could ever count.
Over the years, I’ve also learned something that changed everything:
Self-care isn’t selfish.
For people living with chronic illness, it can be the difference between surviving and actually living. I’ve become almost ruthless about protecting my energy because my energy is a limited and precious resource.
I don’t spend hours arguing with strangers on the internet.
I don’t participate in fandom drama.
Many of us living with chronic illness are also chronically online because our bodies keep us home more than we’d like. It’s incredibly easy to spend the little energy we have doomscrolling or getting pulled into arguments that don’t actually improve our lives.
I’d rather spend that energy reading another chapter.
Or taking a walk, making something, dancing badly in my kitchen, sitting outside with the birds, or listening to the Heated Rivalry soundtrack.
Protecting your peace isn’t avoidance.
It’s medicine.
That doesn’t mean I ignore the world. It does mean I’m intentional about where my limited spoons go.
The funny thing is, people sometimes look at my life now and think, “Wow, you do so much.”
They’re right. I do. And lest you think that’s a good thing, understand it’s also one of the main problems I’m actively working to deconstruct…I am a (not-so) proud member of the OF squad (Over Functioning, get your mind out of the fan). And for me, like most other folks I know who struggle with this, it is a trauma response that continues to actively cause us harm.
But back to energy: I have more energy because I’ve spent years slowly building systems that give some of it back to me!
Five-minute walks became hour-long walks.
Meditation became a habit.
Books became a sanctuary.
Gratitude became a practice.
Rest became productive instead of something I felt guilty about.
Choosing joy became my default.
Recognizing my patterns, trauma responses, and stuck mindset issues led me to be able to work through them. Who knew?!?!
None of it happened overnight.
But all these habits helped me build a life I genuinely love living.
Most days. It’s not all sunshine and rainbows, friend!
None of it “fixed” me…I’m still autistic AF, living with a laundry list of chronic health conditions.
Still parenting, homeschooling, and serving as the emotional support human for two kids with the same long list of challenges I have (sorry you both lost the genetic lottery, kids…but you’re both super cute, my shortness hasn’t impacted your freakishly tall selves, and you have my eyebrows so you’re welcome)!
If you’re reading this while navigating your own chronic illness, disability, neurodivergence, burnout, caregiving responsibilities, or just a season where life feels heavier than usual...
I’m really glad you’re here.
You don’t have to become someone else or optimize your way into perfect health. And you certainly don’t have to do everything I recommend below. Just keep choosing one small thing that makes your life feel a little bigger than your discomfort.
Sometimes that thing is a walk. Some days it’s a nap.
And sometimes, it’s finally picking up the book that’s been waiting on your nightstand to see what that story helps you feel, recognize about yourself, or understand about the world.
Things That Have Helped Me (Not Medical Advice)
I’m not a doctor, and none of this is medical advice. These are simply things that have made a meaningful difference in my own life. Please talk with your healthcare provider before trying anything new.
The Curable App. Learning about pain neuroscience completely changed my relationship with chronic pain. This isn’t an affiliate link. It just genuinely helped me reset my baseline and rethink how my brain responds to pain.
The Cusack Protocol for Ehlers-Danlos Syndrome. The information lives in a Facebook community, and I know that seems sketchy AF, but trust me, the information is good (and this is the only place you can find it). It’s only occasionally open to new members, but they approve join requests frequently. The protocol has literally changed my life!
Getting my MCAS under better control, including working with my doctor on antihistamines and learning more about which supplements work well for my body to support not getting activated by everything I come in contact with. I love your quercetin!
Supporting my vagus nerve with legs-up-the-wall, gentle yoga, breathing exercises, ice massages, and eye movement resets. There are lots of videos on YouTube…This is a quick one that might help.
Meditation, both guided sleep meditations and quiet daily practice.
A gratitude practice, both “regular” and radical gratitude.
Walking, starting with just five minutes and building slowly over time.
Music and dancing, even if it’s just in my kitchen. Bonus points if it makes my kids roll their eyes at me. #WinningAsAMother
Reading. Obviously. Physical books, ebooks, and audiobooks have all been lifelines. And, as it should go without saying around here, read for joy and what brings you happiness. There will be no shoulding of yourself or your reading on my watch!
Support your sensory system! If you’re neurodivergent, or even if you aren’t, learn what works to support your sensory system to function at its best and stop trying to white-knuckle your way through life. Get the weighted blanket, find a fidget that keeps you regulated, wear a hat when you can’t get away from the big lights. And use them all with no apologies or regrets.
Making art and getting crafty. Some days, it feels so good to make something beautiful for no other reason than because you exist and you can. Creating always makes me feel better. And a loving reminder that it doesn’t have to be perfect; it just needs to exist…the magic is in the creation, not the perfection.
Nature, whenever I can find it. Even if it’s just outside in my backyard or a local park.
If you’re a POTSy sort of person, electrolytes. Lots of electrolytes. All. The. Freaking. Electrolytes. All. The. Freaking. Time. Stay hydrated. You are basically a plant with emotions. Also, if you struggle to drink your salts, try mixing your electrolyte powder of choice with a can of plain seltzer. My one kiddo calls them Gatorade sodas - follow me for more tips on how you, too, can get your child with a borderline ARFID diagnosis to properly sustain their eating and drinking habits! But that’s not actually what I do, so maybe just stay for the book recs.
EMDR therapy with a trained counselor. I had medical PTSD after both of my pregnancies. I didn’t treat it until after my second child was born, and I spent several years “living” with it. Going in person to a trained therapist was one of the hardest things I ever did, but also one of the most impactful. It gave me my life back. And took less than 4 sessions. If you have chronic pain or illness, chances are good that you might benefit from at least exploring this modality.
Changing my diet. This is a tricky one and one that is very personal for each of us...what works for me may not work for you, so take this all with a grain of salt and a shot of tequila. I spent a lot of time over a lot of years trying different dietary changes to see what my body needed and how it could feel its best. At this point, that is a motley blend of keto/carnivore with limited caffeine and no alcohol. Does it suck? Kind of. And some days I stray from it, mostly to help model joyful eating habits for my tween. Yet, I usually physically feel like trash after I do. The big takeaway here is we all get to choose our suck when it comes to our diet. Treating my food intake as a source of fuel and not comfort is one of the hardest things I’ve ever done. As someone who has struggled with disordered eating in the past, I also struggle with the restrictive nature of this diet and have a few trusted friends on standby to make sure I’m not turning this into that. And I admit it can be depressing, expensive, and annoying AF to live this way…but it has also greatly reduced my inflammation and flare days. Long story short, experimenting to see what works for your body is worth your time, and check in with your doctor as you do it. The book Revive by Dr. Frank Lipman was my first step in figuring out what my body needed and what was causing me harm. It’s a great first step in seeing what works for your body.
Pay attention to hormones. Having a menstrual cycle was never easy on my body, and pregnancy was a nightmare. Perimenopause made nearly every symptom I had worse. Now that I am almost on the other side of it, I’m doing so much better. If you’re in that stage of life, especially if you’re neurodivergent, it may be worth having conversations with your healthcare provider. There are some new research results coming out about GLP1 medicines and how they can help with PMDD and other hormone and metabolic conditions; it might be worth looking into for you. Also, not medical advice and I’m not including any links on purpose, but if you’re a meat-eating sort of menstruator, you may find beef organ supplements can really help you regulate your hormones and feel a lot better. And for the love of Shane Hollander, make sure you get your iron and ferritin levels checked, as well as a full thyroid panel if you’re feeling low or struggling with fatigue.
It may have been normalized to feel like trash for 40 years of your life, but it isn’t normal, my friend. We all deserve to feel healthy, sane, and supported during our reproductive lives.
📚 Books that have helped me on my journey…
I wouldn’t be me if I didn’t have some book recommendations for you! Some of these may be affiliate links, which just means I get a tiny kickback for fueling your reading habit.
Make Miracles in 40 Days by Melody Beattie.
The Gratitude Diaries by Janice Kaplan
Revive by Dr. Frank Lipman
The Emotion Code by Dr. Bradley Nelson
Wintering: The Power of Rest and Retreat in Difficult Times by Katherine May
We Need Your Art by Amie McNee
No Mud, No Lotus: The Art of Transforming Suffering by Thich Nhat Hanh
Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg
Hormone Repair Manual: Every Woman’s Guide to Healthy Hormones After 40 by Lara Briden ND
Period Repair Manual: Natural Treatment for Better Hormones and Better Periods by Lara Briden ND
Self-Care for Autistic People by Dr. Megan Anna Neff
The Mountain is You by Brianna Weist
The Tapping Solution: A Revolutionary System for Stress-Free Living by Nick Ortner
One Small Step Can Change Your Life by Robert Maurer, Ph.D.
How to Break Up With Your Phone by Catherine Price
Meditation for Fidgety Skeptics by Dan Harris
Radical Acceptance: Embracing Your Life With the Heart of a Buddha by Tara Brach
And, if you are dealing with chronic health conditions that are linked to your relationship with your parents, your childhood, or your current season of mothering, these books may be helpful for you.
I would encourage you to make sure you have a professional counsellor lined up to help you navigate any feelings that come up as you read through them. They can be very illuminating but also bring up some emotions that need to be processed with support. Most people living with chronic pain and health conditions are women, but doctors just can’t figure out why?! 🙃
Mother Hunger by Kelly McDaniel
Discovering the Inner Mother by Bethany Webster
Motherwhelmed by Beth Berry
The Drama of the Gifted Child by Alice Miller
What Happened to You?: Conversations on Trauma, Resilience, and Healing by Bruce D. Perry, M.D. Ph.D and Oprah Winfrey
I’d love to hear from you.
If you live with chronic illness, what’s one thing that’s genuinely helped?
And if you don’t, what’s the book that’s carried you through one of the hardest seasons of your life?
Let’s build a list together! Someone reading the comments might discover exactly what they need today.
Amazing post! I am glad you have found ways to feel better. Thank you for sharing.