But Are You Feeling Better?

But Are You Feeling Better?

The Persistent Question that Emphasises the Weight of Forever

There’s a particular kind of grief that comes with being diagnosed with a lifelong illness. Not the dramatic, cinematic grief people expect. Not tears on the kitchen floor every day or some huge breakdown where the world stops turning. It’s quieter than that. More insidious. It slips into your life slowly, settling itself into every corner until one day you realise nothing feels untouched anymore. Nothing is safe from the reach of your illness. Because, as much as you don't want it to be true, sometimes it simply feels like your illness is you and you are your illness.

Being diagnosed with Multiple Sclerosis has cracked something open inside me. Another diagnosis. Another 'there is no cure'. Another 'it's lifelong management'. Another injection, another scan, another disablement. 

And that is the worst part. That it hasn’t happened in isolation. Because nothing in my body ever seems to happen neatly or one at a time. MS arrived carrying all the weight of everything else I’m already trying to survive - endometriosis, adenomyosis, PMOS, the chronic pain, the hormonal chaos, the endless appointments, the medications, the exhaustion. It’s like my body has become a full-time job I never applied for and cannot resign from.

I am so fucking tired.

Not the kind of tired that disappears after a nap or a good night’s sleep. Not “burnt out”. Not “a bit run down”. I mean a bone-deep, soul-heavy exhaustion that sits inside me every minute of every day. The kind where lifting your head feels impossible. Where replying to messages becomes overwhelming. Where brushing your hair feels like a task worthy of a medal. MS fatigue is cruel because it steals your ability to explain it. People hear “fatigue” and think they understand, but they don’t. They can’t. Because how do you explain feeling like your entire nervous system has been drained by life itself?

And yet the world keeps moving.

Emails still need answering. Bills still need paying. Laundry still piles up. People still expect versions of you that no longer exist.

Last week I was called out by friends and family because I hadn't responded to text messages in 2 days. Accused of ignoring messages or not being responsive enough. Those people don't see my lying on the bathroom floor at 3am because I don't know whether I am going to bleed until I pass out, become paralysed by the pins and needles in my legs and spine, or vomit until my throat and chest burn.  52 unread messages in my phone from people I love, and people I care about. But my energy only stretches so far when my body is in a constant state of stress and fight.

And then there are the questions people ask with kindness that still manage to break something inside you.

“Are you feeling better?”

I know people mean well when they say it. I know it’s normal. Human. Caring, even. But every time someone asks me that question, I feel this wave of anger and grief rise up in my chest because I’m never fucking better. Not really. Better implies an end point. Recovery. Improvement. A return to normality. And there is no version of my life where this disappears.

There is treatment.

There is management.

There is survival.

But there is no “better”.

And having that reality mirrored back to me in such an innocent question can feel devastating. Because it forces me to confront, over and over again, that this is permanent. That my body is not temporarily unwell. This is my life now. But how do I say that to a manager, or a friend who can never possibly grasp how painful and exhausting just existing is to me.

There’s something deeply isolating about becoming chronically ill in a world obsessed with productivity. I spend so much of my time trying to appear functional enough to make other people comfortable. Smiling through appointments. Making jokes about my symptoms. Downplaying how bad things are because I’m terrified of being seen as dramatic, difficult, negative, lazy. Especially as a woman. Especially after years of medical gaslighting that taught me pain only matters when it becomes unbearable enough for someone else to witness it. But I never want there to be a witness. I never want other people to feel uncomfortable or scared or upset. I hide my pain to protect the comfort of others.

But the truth is, sometimes this all feels unbearable.

Recently, I was walking down the street feeling pain radiating through my body, exhausted beyond words, depression wrapping itself tighter and tighter around me like something suffocating. And suddenly it all became too much. The weight of the pain. The fatigue. The fear. The permanence of all of this.

And I just burst into tears in the middle of the street.

Not because anything dramatic happened. Nobody said anything cruel. Nothing catastrophic occurred in that exact moment. I simply reached capacity. My body and mind could not carry the weight of everything anymore, even for one more minute.

That’s the thing people don’t always understand about chronic illness. Sometimes you are not reacting to one bad day. You are reacting to hundreds of days stacked on top of each other with no real pause in between.

Sometimes I sit in silence and think about the fact that this is forever.

Forever medications.

Forever monitoring.

Forever treatment plans.

Forever side effects.

Forever wondering what symptom is caused by what illness.

Forever trying to untangle whether I’m exhausted because of MS, because of pain, because my hormones are wrecked, because I haven’t slept properly in years, or because depression has quietly wrapped itself around all of it.

Because yes... depression lives here too.

How could it not?

There is grief in watching your body become somewhere unsafe to live. There is grief in losing certainty. Grief in becoming someone who measures energy in microscopic portions. Grief in realising spontaneity now comes with consequences. Grief in mourning the version of yourself who thought life would eventually become easier if you just kept pushing hard enough.

I think people imagine diagnosis brings clarity. Answers. Relief. But honestly? Sometimes it just gives your fear a name.

And once you have the name, you also inherit the terrifying reality of what comes next.

The medications with leaflets thicker than novels.

The conversations about lesions and progression.

The scans.

The blood tests.

The constant awareness that your immune system is attacking you from the inside out.

It is exhausting carrying this much awareness inside one body.

And lonely too.

Because chronic illness isolates you in ways people don’t talk about enough. Friends stop checking in because they assume you’re “dealing with it”. People grow uncomfortable around long-term illness because there’s no satisfying ending to offer. You become trapped between being “too sick” for healthy people to understand but “not sick enough” to justify falling apart completely.

So you continue.

You attend appointments.

You take the medication.

You advocate for yourself.

You survive.

But survival is not the same thing as living.

I don’t write any of this because I want pity. I write it because this is the reality so many of us quietly carry while still trying to function normally. And because pretending I’m coping perfectly all the time is exhausting in itself.

Some days I am hopeful. Some days I feel strong. Some days I can convince myself I will adapt to this version of life and still find joy within it.

And some days I feel crushed by the weight of how long this road is going to be.

Both truths exist at the same time.

I think that’s the hardest lesson chronic illness teaches you — that you can be grateful to still be here while also grieving the life you thought you would have. You can be resilient and deeply depressed. You can keep going while secretly wondering how much more your body can take.

And maybe that honesty matters.

Because behind every “I’m fine” is often someone fighting a battle they are too exhausted to explain properly.