chronicillnesswarrior

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

June unleashed its storms, but I danced through the chaos and owned the calm. #chronicillnesswarrior #Bpdstrong #ptsdsurvivor #MightyAndUnstoppable #WinningJune #TheMighty

For years and years I’ve had problems with my joints, but the worst ones have always been my hips, knees, shoulders and fingers. Last year I was going to sit with my legs crossed, and as I did so I felt something hard in my right hip grind and I actually screamed. The pain literally blinded me for a good 10 seconds. After straightening my leg slowly, it eased up. But any time I turned my leg or lifted it, that same pain came back with a vengeance.

Naturally, I went to my GP and she and a colleague had me moving my leg in different ways and angles, which really really hurt, and said it was definitely an arthritic pain. They gave me some kick-ass anti inflammatory meds primarily used for arthritis (Meloxicam), and said they’d send me for an urgent x-ray of my pelvis.

A few days later I had the x-ray, even though the technician kept making me move my leg in different angles again.

And a week after that, my doctor called me with the results. Apparently I have something called a hip impingement? There’s a deformity in the ball of the joint that fits into the socket of my pelvis. Like an extra lip of bone. And over the years it’s been grinding in the socket so much it’s worn it down, and now I have arthritis. She said my left hip has a similar deformity but nowhere near as bad.

So, I’ve got to try and take it easy. I’m still going for very slow and short walks to get me out of the house. But it’s so damn frustrating that I have to slow down! And I know if I go against what she suggested, I’m going to seriously pay for it. Ugh.

So, I’ve done a lot of reading in the last few weeks. Yesterday I picked up A Court of Thorns And Roses (ACOTAR), and this morning I was sat in my mum’s room just quietly reading… Until Loki jumped up and stared at me. 😂 I don’t think he approves of me reading instead of giving him cuddles. He’s such a jelly-belly!

Anyway… I hope you’re all doing okay and having a good year so far. 🌺

#ChronicPain #chronicillnesswarrior #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #EDS #hipimpingement #Arthritis #ArthriticPain #InterstitialCystitis #LiverDisease #BPD #ComplexPTSD #Depression #Anxiety #resting #Reading

Disabled and chronically ill folks do not enjoy being forced to give up the things they love to spend their days in bed. #ChronicIllness #chronicillnessawareness #chronicillnesswarrior #chronicillnesslife #chronicillnesscommunity #ChronicPain #chronicpainawareness #Chronicpainsucks #chronicpainlife #ChronicPainRelief #chronicmigraine #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #fibrofighter #fibrowarrior #fibroflare #Flareup #flareupssuck #bedbound #housebound #AmbulatoryWheelchairUser

After weeks and weeks of leg and hip pain and some blood tests, yesterday my GP diagnosed me with Arthritis that’s associated with my joint hypermobility (Ehler’s Danlos Syndrome) I’ve just gotta have an x-ray of my pelvis to make sure the bone hasn’t been damaged from the constant grinding feeling in my hip joint when I move my leg, etc.

I’ve been prescribed some kick ass anti-inflammatory medication called Meloxicam and it’s really helping! I managed to tidy my room up and get a nice hot shower (which definitely helped my back and hip). So, now I’m gonna maybe make a cup of hot chocolate and relax while playing WoW.

(Yes, I’m aware my hair looks awful - I’m trying to grow it out so I’m back to my natural colour).

I wish you all a very Happy New Year! 🥳

#chronicillnesswarrior #ChronicPain #POTS #PosturalOrthostaticTachycardiaSyndrome #EDS #EhlersDanlosSyndrome #LiverDisease #NAFLD #BorderlinePersonalityDisorder #BPD #InterstitialCystitis #ic #Diabetes #Migraines #Arthritis #Jointpain #NewYearsEve #Happynewyear

Last night I really struggled to get some sleep. On Friday, while walking from a shop to a taxi, I lifted my left leg to take a step and I felt a twinge in my lower back. Then, when I went to lift my right leg to do the same, I nearly crumpled to the floor as an intense cramp went through the entire of my lower back. I managed to hobble my way to the taxi and got myself home.

I’ve been using heat pads and an anti-inflammatory gel and it’s given very little relief, but I persevered. Then, last night at around midnight I had a POTS episode whilst I was on my way to the bathroom before bed. I fainted and hit the floor hard, according to my mum. I’m just glad I wasn’t conscious when I hit the floor because I can only imagine the pain I would’ve felt.

After the episode, I really struggled to get up, get to the bathroom and get to bed. But I managed it. I took extra painkillers but I just could not get comfortable. I tried lying on my side with a pillow between my knees, I tried lying on my back with a cushion under the curve of my spine. Nothing was working. Eventually, I gave up and pulled out my laptop to do some more notes on my novel.

As usual, Loki was sticking to my side. Like he normally does when I’m unwell or in pain. He came up for lots of cuddles and fusses. Until he settled behind my fan, and slowly crawled up until his head was peeking at me from behind the screen. He looked so cute, I had to take a photo. My little mascot. Somehow… He always makes me feel better. And I feel like he really does love me back.

Anyway, I spent the night just tapping away on my laptop, listening to quiet music while I made my notes and tweaks. I just wanted to show you all how much of a good boy he is. Don’t worry - he was given lots of treats and belly rubs.

#chronicillnesswarrior #ChronicPain #POTS #AutonomicDysfunction #EhlersDanlosSyndrome #EDS #PosturalOrthostaticTachycardiaSyndrome #Jointpain #Fainting #BackPain #cramps #Pain #InterstitialCystitis #BPD #NAFLD #LiverDisease #FattyLiverDisease #Diabetes #Migraines #Cats #Animals #TherapyPet #TherapyAnimal #therapycat