First Thoughts

I have lived with Dysthymia for so long that I don’t remember a version of myself without it.

That isn’t something people usually understand. They assume depression arrives — that it has a beginning, a cause, an event that cracked something open. They ask when it started, what triggered it, what happened to me. I never know how to answer, because for me it didn’t arrive. It was already there. I adapted without ever noticing the adaptation.

Dysthymia isn’t a storm. It doesn’t knock things over. It doesn’t announce itself. It’s a persistent condition of being a quiet, ongoing dullness that hums beneath everything else. It’s waking up every day to the same emotional temperature and realising, years later, that other people experience seasons and as a child, I thought this was just what being alive felt like.

I wake up already tired. Not the normal kind of tired, not “I could use more sleep” tired, but a deep, cellular exhaustion, like my body ran a marathon while I was unconscious. My muscles feel heavy, my joints ache faintly, and my stomach is already tight, already watchful. Before my feet even hit the floor, my brain is awake and talking. It never stops talking.

This exhaustion isn’t relieved by sleep. I can sleep eight hours, ten hours, twelve hours, and still wake up feeling like I’ve already used up my daily allowance of energy, only ironic I now have to take the medication in order to fall asleep, otherwise its days of being awake, begging to sleep but no chemicals in the brain to switch itself off.

People tell me to exercise, to get fresh air, to build routines, to do mindfulness. I do those things. They help in the way holding an umbrella helps in a downpour, useful, but not transformative. The rain is still falling.

Joy doesn’t land properly. It arrives, but it doesn’t stay. I can recognise good moments intellectually, birthdays, achievements, kind gestures, but the emotional payoff is faint. It’s like hearing music through a wall. I know it’s there. I know it’s meant to move me. But it doesn’t quite reach my nervous system.

Sadness exists, but it’s rarely acute. Instead of sharp grief or clear despair, I experience a low, constant melancholy — not painful enough to demand attention, but persistent enough to colour everything.

I feel things. I care deeply. In fact, caring costs me more than it seems to cost others, because emotions don’t energise me — they drain me. Loving people is work. Enjoying things is work. Even resting takes effort. There’s a particular cruelty in being emotionally present but never emotionally full.

When I say my brain doesn’t function chemically the way it’s meant to, I don’t mean I feel sad all the time. Sadness implies feeling. What I experience more often is flatness. A muted emotional range where joy doesn’t land properly and pain doesn’t leave when it should.

Neurotransmitters—serotonin, dopamine, norepinephrine are meant to reinforce meaning. They tell the brain, this matters, this was rewarding, this is worth repeating, worth attaching feelings too. In my brain, those signals feel underpowered. It’s like trying to power a city with a flickering generator.

Physical problems

What surprised me most, once I began to understand dysthymia, was how physical it is. My body carries the illness just as much as my mind does.

I live with chronic muscle tension — shoulders permanently raised, jaw clenched without awareness, neck stiff as if I’m bracing for impact. I stretch. I massage. I try to relax. The tension returns, as automatic as breathing.

Headaches are frequent. Not migraines, not dramatic, just a dull pressure behind the eyes, a tight band around the skull, a constant reminder that my nervous system is overworked.

My joints ache without inflammation. My back hurts without injury. I wake up sore, as though I’ve been holding myself rigid all night. Brain Fog and Slowness. Dysthymia dulls cognition in ways that are hard to explain to people who haven’t experienced it.

My thinking feels slower. Words disappear mid-sentence. Names slip away. Concentration requires deliberate effort, and even then it’s fragile. I reread the same paragraph multiple times without absorbing it. I lose track of conversations while actively participating in them.

It’s not dramatic enough to be obvious. I still function. I still perform. But internally, I’m aware of the lag, the sense that my mind is wading through something thick.

The moment that changed for me, everything happened fast. I lost all the hearing in one ear within four hours. One morning, sound was there; by the afternoon, it was gone. There was no gradual fade, no warning that allowed me to prepare. The world simply tilted into silence on one side. I remember the panic of those hours, the disbelief that something so fundamental could disappear so quickly. Doctors moved urgently, but urgency does not guarantee answers. Tests were run, explanations offered and withdrawn. What remained was the reality: complete hearing loss in one ear, permanent and irreversible.

What made it harder to process was that this was not the end of the story. Over the following year, I lost half the hearing in my remaining ear. This loss was slower, cruel in a different way. I could feel it slipping, frequency by frequency, conversation by conversation. Sounds dulled, then distorted. Background noise swallowed words. I learned to watch mouths more carefully, to guess at what I could no longer clearly hear. Each audiology appointment confirmed what I already felt in my body: the damage was continuing.

Autoimmune illness often works like this. Sometimes it strikes suddenly and violently, as it did with my hearing. Other times it erodes you slowly, giving you just enough function to notice what you are losing. Living with that uncertainty is its own kind of exhaustion. I never know which system will be targeted next or when my body will decide that something essential has become the enemy.

Chronic fatigue syndrome is the backdrop against which everything else plays out. This is not ordinary tiredness. It is a bone deep exhaustion that sleep does not fix. I wake up already depleted, as if my body has spent the night fighting itself. Energy is rationed carefully because once it is gone, it may not return for days. Simple tasks—showering, cooking, leaving the house—require planning and recovery time. Pushing through is not an option; my body enforces its limits harshly and without negotiation.

That fatigue is tightly woven with pain. Arthritis and joint pain have become daily companions. My joints ache, stiffen, and swell without warning. Some mornings my hands feel decades older than the rest of me, fingers slow and reluctant to move. My knees protest stairs. My hips and lower back burn after standing too long. The pain shifts location, intensity, and character, making it difficult to predict or explain. It is exhausting to inhabit a body that constantly hurts, especially when the pain is invisible to everyone else.

Inflammation is the common thread. I feel it in my joints, in my muscles, and in the way my body responds to stress. Even small amounts of exertion can trigger flare ups that ripple outward, worsening fatigue and pain simultaneously.

My digestive system has not been spared. IBS has turned eating into a calculated risk. Foods that once brought comfort now bring pain, bloating, cramping, and unpredictable bowel symptoms. My gut reacts strongly to stress, which means my body and mind amplify each other’s distress. On bad days, it feels as though my entire torso is clenched from the inside, responding to threats that aren’t there. The constant vigilance required to manage IBS, monitoring food, timing meals, planning exits, adds another layer of fatigue to an already exhausted system.