lifewithchronicpain

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I wrote this tonight #feelinginvisible #grief #loneliness #mentalhealth #isolation #selfadvocacy #empathy #resilience #chronicpainawareness

Witnessed?
By Chrissy Nowak
I found myself feeling frustration rise to the surface as I texted my sister. She was being kind, but the content was upsetting. She had read my latest essay. I had spent hours writing the essay called Symphony of Pain, describing my increasing pain over the years and how chronic fatigue and pain feel like a symphony inside my body—a composition only I can hear. In that piece, I wrote about how I’ve had to learn its songs and translate them just to be understood. I ended the essay with a note of resolution, believing that in my honesty, I had finally helped some people, like my sister, truly see me.
So when she texted me, “I didn’t know your pain got worse or was this bad,” I felt my heart sink. All my work—not just in my essay but my daily work of showing my truth, wearing heat packs on my neck during vacation, speaking up when the pain was unbearable—felt erased. I naively thought those actions communicated the depth of my suffering. I literally don’t have any other moves. What else can I do or say?
I feel utterly alone. Lost to the outside world. On the surface, I am seen as silent and healthy while the symphony of pain plays loudly, relentlessly, every single day. I want so badly to be encouraged because I know I am overcoming so much. But no one can hear it. No one can see it.
I keep thinking about what I wrote in my previous essay, “Symphony of Pain.” I want to include a part of it here because it explains the foundation of my struggle—the invisible efforts I’ve been making for years. It feels important to bring that voice back, as it’s the root of the frustration I’m feeling now.
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Excerpt from Symphony of Pain
I started noticing a pattern.
Every time I looked back at the year behind me, I thought, That was the hardest year yet. I struggled. And then the next year proved me wrong.
It always got harder.
The exhaustion deepened. The symptoms thickened. My ability to fake wellness thinned. And beneath it all, a sound. Not a scream, not a siren—more like a murmur of static at first, faint and easy to tune out. But then it grew. Louder, more insistent. The hum of something breaking down.
Each year, my body added new instruments to the composition—aches, spasms, stiffness, stinging. The fatigue lengthened into full measures. The volume of pain rose, not all at once, but with the slow confidence of a swelling crescendo. I didn’t know it yet, but I was living inside a symphony of suffering, one I had never auditioned for.
And yet, somehow, I kept maintaining my life around it.
Little by little, the things that once defined me fell away. Weekend plans. Group texts. The joy of dancing, jogging, working late on a creative project. My ability to cook dinner without collapsing from aching pain. Even the smallest pleasures—organizing a messy drawer, walking through the park with my son, fixing something with my hands—became casualties of some unseen war. A silent invasion was unfolding inside my skin. I couldn’t stop it. I couldn’t name it. I just knew that something was very wrong.
But wrong in a quiet way. Wrong in a way no one else could hear.
The pain didn’t arrive as an explosion. It crept in like a slow, discordant chord—low and humming, a sound you can only hear if you sit still enough.
At first, it was background noise. A tight jaw in the morning. A flare in my back after a long day. A headache that felt like a violin string pulled too tight. But over time, the noise layered. What was once occasional became constant. What was manageable became unbearable.
Every part of me began to vibrate with its own frequency of discomfort.
My neck locked up. My spine stiffened. My jaw became a battlefield—tight, inflamed, a source of electric pain that pulsed into my temples and down to my shoulders. I wore heat packs like armor. I whispered prayers through my ice packs. I massaged my face so often I memorized the exact geography of my suffering.
And still, no one could hear it.
I’d sit at my desk during work calls, nodding and smiling, while inside, my body screamed in feedback loops. My legs buzzed. My brain glitched. Simple words got lost mid-sentence, like dropped notes in a rehearsal gone wrong.
“I’m too tired.”
“My arms feel heavy.”
“My pain is bad today.”
“I can’t think straight.”
“I need help.”
I said these things. Out loud. Over and over. The more I said them, the more invisible they became. Like an overplayed track that people start to ignore.
But for me, the music never stopped.
I’d wake in the middle of the night with pain radiating through my ears like brass horns blaring in the dark. I’d get up, shuffle to the freezer, place my jaw on ice, and sit in silence, eyes closed, trying to slow the percussion pounding in my skull. This wasn’t ordinary tiredness. This was marrow-deep depletion. My nervous system frayed like an old string. My body felt like white noise of pain with pain glitches jolting in.
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What Even Is Pain?
A few days ago, I kept scribbling a single question in my notebook: What even is pain?! That line pulses through my mind like a warning siren. What is pain, really? I just want to turn it off. I just want silence, so I can finally be the person everyone else thinks I am. Because these two versions of me—the one they see and the one I live inside—only make me feel more isolated and lonely.
I ache for encouragement. I don’t want to stop overcoming my pain. I’ve already sacrificed so much—so many hobbies and activities I yearn to get back to. I grieve for those losses, but I also hope. I keep pushing, believing that maybe, just maybe, I’ll get to do them again. This takes more strength than I ever imagined I’d have, and it’s strength I rarely get credit for.
Because if I stop, I’ve lost. I’ve lost to the pain.
I refuse to lose.
I love my ordinary life—the small, steady rhythms that still hold meaning. I still find good things tucked into the edges of my days. My son is pure joy, and my family is my sunlight, the light I reach for even on the darkest days. I push through these moments, not because I’m fine, but because I know the alternative is worse. People think I’m okay because I work. No! I’m not okay. I work because I’m refusing to give up. Maybe that doesn’t deserve a parade or praise, but maybe—just maybe—it deserves acknowledgment.
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What I Wish Someone Would Say to Me
I see you. I see how hard you’re fighting, every single day. You’re not invisible to me. I know you’re not “okay” just because you show up to work or push through the pain—you do those things because you refuse to give up. That strength is extraordinary.
You’ve given up so much already, and yet you keep moving forward, even when it feels like no one notices. I notice. I see the way you’ve learned to live inside this invisible storm. I know it takes everything you have just to keep going. And you deserve to be encouraged for that—not because you’re sick, but because you’re brave.
You are not failing. You are not weak. What you’re doing—continuing to push, to hope, to love your life in the midst of pain—is the very definition of strength. I believe in you. I’m proud of you.
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The more of myself I lose to my chronic illness, the more activities I surrender—whether or not they were fun—the less whole I feel. I’m aching to be whole again. If I can’t be whole again, I at least want to be seen. I want my decline and my fierce battle to be noted by somebody who loves me. That would somehow make the battle less lonely.

#ChronicPain #invisibleillness #chronicillness #autoimmunedisease #painawareness #fatigue #psoriasis #thyroiddisease #feelinginvisible #grief #loneliness #mentalhealth #isolation #selfadvocacy #empathy #resilience #chronicpainawareness #lifewithchronicpain #illnessandidentity #chronicillnessstories #chronicillnesswarrior

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Strength

Lately strength has been difficult for me to find. Life has thrown me so many curve balls, and they keep nailing me in the face and abdomen every single time. Why? Why does it have to happen all at once? Why does it have to happen to me every time? It is not fair and I simply want to give up.
When life gets like this and I think I can't handle anymore I always prove to myself that I can. I fight the battles with strength and tears and I always end out on top. I show myself just how strong I actually am. It is never easy I have multiple break downs, but I always end out on top. I always end up stronger than I was before.
This mountain has me thinking back to my first mountain I had to climb. The diagnosis. When I was going through my diagnosis I was seen by 6 different specialist before we found the right one. I was told that I did not have Hereditary Angioedema even though I had all of the symptoms and a strong family history. I was called crazy, told it was all in my head, and that there was nothing wrong with me. I felt like I would never get the diagnosis that I so desperately needed. After a year and a half of this I finally received the magic words I dreamed of hearing, "you have Hereditary Angioedema". Dreaming of getting a diagnosis seems silly, but when you have something incredibly wrong with you it is needed. 
That was just one mountain I had to climb to get to where I am now. It was rocky, I slid down a few times, but I never gave up. I kept fighting and I still fight for myself everyday. I fight for my health, meds, and treatments I need. The mountain that I am facing now is a big hurdle. It is taking so much energy out of my fight, but I am not going to give up. I will find the strength I need, and I will win. 
Once I get over this mountain it will be another memory that I can look back on. I can look back and see how far I have come, and how strong I really am. I will continue on my journey and keep pushing through whatever life has for me.
xoxo--Brittney

#strength #HereditaryAngioedema #ChronicIllness #RareDiseases #Thoughts #rarediseasewarriors #Undiagnosed #lifewithchronicpain #ChronicPain

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Another late night

I have been struggling with extremely late nights. I don’t sleep much. I’m almost 48, menopause is starting. And with my chronic pain, diabetes and a slew of other issues, I feel like I never get anything done. My life is spent in my recliner and spurt sod energy that come on when I do get some cleaning done, the. I’m beat and ready for a nap. It’s a cycle I would love to break, but I don’t know how. #sleeplessnights #ChronicIllness #Insomniac #Depression #lifewithchronicpain

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Housework #ChronicIllness #Fibromyalgia

I can't do a lot of house work anymore, I turn 40 next year and I never imagined it would be this bad. I can't clean like I want my house clean, can't stand too long, or bend over and collect things off the floor. I am lucky, I do have a carer - my husband does most of the work. I have worked out however: If i give myself only the time it takes to boil a newly filled kettle, to pick up rubbish, wipe a bench, load some dishes, then I am doing something. It is not much, but in that time I can contribute to cleaning. I can do something towards helping with the upkeep in my house. It makes a difference to me emotionally to sit down at the end of the day and know I have done something. #lifewithchronicpain #hopeinsmallplaces

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