Living with Illness

Key takeaways

• A health diagnosis doesn't just affect your body—it affects your identity, your relationships, your future, and your daily sense of self
• The emotional weight of illness often goes unacknowledged, even by healthcare providers focused on physical treatment
• Chronic illness brings particular challenges: invisibility, unpredictability, ongoing grief, and the exhausting labour of managing it all
• Struggling mentally while dealing with physical illness isn't weakness—it's a normal human response to genuinely difficult circumstances
• Counselling offers a space to process what you're going through without having to protect anyone, perform wellness, or be told to stay positive

If you're reading this, something about your health has changed—or maybe it changed a long time ago and you're still trying to make sense of what that means for your life. You might have a new diagnosis. You might be living with a condition that's been part of your story for years. You might be caring for someone else whose illness has reshaped your world too.

Whatever brought you here, I want to acknowledge something that often goes unsaid: this is hard. Not just physically hard—though it may well be that—but emotionally, psychologically, existentially hard. Living with illness asks things of you that go far beyond managing symptoms and attending appointments.

And yet, so much of that inner experience remains invisible. Doctors focus on your body. Friends ask about your treatment. But the question of how you're really doing—what this has done to your sense of yourself, your hopes, your fears—often doesn't have anywhere to land.

This page is an attempt to speak to that part of it.

What a diagnosis does to you

Receiving a health diagnosis—whether it confirms something you suspected or arrives out of nowhere—doesn't just change your medical status. It changes your relationship with your body, your sense of the future, and often, your understanding of who you are.

The first shock

The initial period after a diagnosis is often surreal. Even if you'd been worried something was wrong, having it named and confirmed can feel like a door closing. This is really happening. This is really me.

You might feel shock and disbelief, a strange sense that this must be happening to someone else. You might feel fear—about what treatment involves, whether you'll be okay, what this means for the life you'd planned. You might feel anger, at your body, at the randomness of it, at a universe that doesn't feel fair.

And sometimes, there's relief. If you've spent months or years with unexplained symptoms, being taken seriously by doctors, finally having a name for what's wrong—this can bring its own kind of release, even when the news isn't good. Relief and dread can exist in the same moment. That's not strange; that's human.

The grief that comes with illness

Illness brings loss, and loss brings grief. You might be grieving the health you had before, the body that used to do what you asked of it without complaint. You might be grieving a future you'd imagined—the career, the travel, the retirement, the life that now looks different or impossible.

You might be grieving the person you were before this happened. I used to be someone who could... Illness can steal parts of your identity, and that loss deserves to be mourned.

This isn't self-pity. This is grief, and it's appropriate. The problem is that the people around you—and the healthcare system—often don't recognise it as such. They want you to be positive, to fight, to focus on recovery. But you can't skip the grief. It has to go somewhere.

The ongoing weight of living with it

Initial reactions eventually settle into something more chronic: the daily reality of living with a body that doesn't work the way you want it to. This brings its own psychological challenges, distinct from the shock of diagnosis.

The uncertainty

Not knowing is exhausting. Not knowing whether the treatment will work. Not knowing whether you'll get worse, get better, or stay the same. Not knowing what you'll be able to do next week, next month, next year. Living with a body you can't fully predict or trust.

Some people find a kind of peace with uncertainty over time. Others find it remains a constant, low-level hum of anxiety underneath everything else. Both responses are normal.

The loss of control

Part of being healthy is the illusion that you're in control of your body. Illness shatters that illusion. Your body does things you didn't choose. You depend on medical systems, medications, other people. Decisions about your own body may be made by doctors, insurance companies, bureaucratic processes.

This loss of autonomy can feel infantilising, frustrating, frightening—especially if you valued your independence highly.

The changes to who you are

Illness often forces a confrontation with identity. The roles you played, the things you were known for, the ways you saw yourself—these may no longer fit. This isn't just about adjusting to practical limitations. It's about renegotiating your entire sense of who you are.

The isolation

Even with people around you, illness can be deeply lonely. Others can't fully understand what you're experiencing. You may feel like a burden. You may find yourself protecting others from the full weight of how you're feeling.

And some people pull away. They don't know what to say. Your illness makes them uncomfortable, or sad, or confronts them with their own vulnerability. You may lose friendships or find relationships strained by something that wasn't your choice.

The particular challenge of chronic illness

If your condition isn't going away—if it's something you'll live with rather than recover from—you face a particular set of challenges that acute illness doesn't bring.

The invisibility problem

Many chronic conditions don't look like anything from the outside. You might appear completely healthy while feeling terrible. This creates a constant, exhausting gap between your inner experience and what others see.

The pressure to perform wellness—to look healthy even when you're not—adds another layer of burden. And when you do ask for accommodations or support, you may face disbelief or minimisation because your illness isn't visible.

The unpredictability

Chronic conditions often fluctuate. You might have good days and bad days, good weeks and bad weeks, with no reliable pattern. This makes planning almost impossible.

Explaining this to others—who live in a world where ability is assumed to be stable—is exhausting. And the inconsistency can make you doubt yourself. Am I really this bad, or am I just not trying hard enough?

The grief that keeps coming back

With chronic illness, grief doesn't resolve. As your condition changes, as you lose new abilities, as you miss new opportunities, the grief resurfaces. This isn't failure to adjust; it's an ongoing process of loss that has to be metabolised again and again.

The invisible labour

Managing a chronic condition is work—often full-time work on top of whatever else you're doing. The medication schedules and side effects. The medical appointments and test results. The lifestyle modifications and energy rationing. The paperwork, the insurance battles, the benefits applications. The constant explaining of your condition to new doctors, new employers, new people who need to understand.

This labour is rarely acknowledged. From the outside, you might look like you're not doing much. From the inside, you're running a small administrative empire just to stay functional.

When mental health gets affected

Mind and body aren't separate, despite how our healthcare systems treat them. Living with physical illness has profound effects on mental health—not because people who get sick are psychologically weak, but because illness creates exactly the conditions that affect mental health.

Depression and anxiety are common among people with chronic illness. Chronic pain and fatigue directly affect brain chemistry. Uncertainty and loss of control trigger anxiety. Social isolation and disrupted life plans increase depression risk. Some conditions and medications directly affect mood. None of this is weakness. It's biology and circumstances.

Sometimes people develop trauma responses to their illness or medical experiences. Frightening procedures, loss of bodily autonomy, the ongoing threat of worsening—these can leave marks that look very much like PTSD. If your body has become a source of danger and unpredictability, your nervous system may stay on alert even when it doesn't need to.

The mental health effects of illness deserve treatment and support in their own right—not dismissal as "just part of being sick" or something you should handle on your own.

What often stays unspoken

So much of the emotional experience of illness remains hidden, even from people who care about you. There's a pressure to be brave, positive, grateful for what you still have. And there are feelings that don't fit that script.

• The guilt. Feeling like a burden. Guilt about what you can't do, what you need, how your illness affects others. Guilt about not being positive enough, not fighting hard enough, not recovering fast enough.
• The shame. Shame about what your body can't do. Shame about needing help. Shame about visible changes to your appearance or ability. Shame about struggling with things that used to be easy.
• The complicated relationship with hope. When recovery is uncertain, hope itself can feel dangerous. If you let yourself hope and then get worse, the fall is harder. Some people find it safer to expect the worst. Others can't stop hoping even when it hurts.
• The survivor's guilt. If you do improve, you may feel guilty about others who haven't. If you're part of a community of people with your condition, watching others decline while you stabilise can bring its own painful weight.
• The healthcare trauma. Being dismissed. Being disbelieved. Being misdiagnosed for years. Being treated without compassion or autonomy. These experiences layer additional hurt onto the illness itself, and they deserve acknowledgment.

How counselling can help

Counselling for people living with illness isn't about fixing your mindset or teaching you to be positive. It's about having a space where the full truth of your experience can exist—without having to protect anyone else, without having to perform wellness, without being told to count your blessings.

• A space for everything you're feeling. The fear, the anger, the grief, the guilt—all of it. You may be shielding loved ones from the worst of it. Here, you don't have to.
• Processing loss as it happens. The losses that accompany illness need to be mourned, and with chronic conditions, this isn't a one-time process. It's ongoing, and having support for that matters.
• Managing the uncertainty and anxiety. Finding ways to live with not knowing, to find moments of peace within ongoing challenge, to manage the particular anxiety that comes with an unreliable body.
• Working with identity. When illness limits what you can do, it often challenges your sense of who you are. Counselling can help you explore who you are beyond your health, and find new sources of meaning and value that don't depend on what your body can do.
• Navigating relationships. Illness changes relationships. Some strengthen; others strain. Working through these changes, setting boundaries, asking for what you need—these are skills that can be developed with support.
• Addressing trauma. If medical experiences or the illness itself have been traumatic, these wounds deserve attention. You don't have to carry them alongside everything else.

A note to end on

Living with illness is hard in ways that people who haven't experienced it often don't understand. The challenges are real and significant. If you're struggling, that doesn't mean you're failing—it means you're responding to genuinely difficult circumstances.

You are not your illness. Your worth is not determined by what your body can do. And you don't have to carry all of this alone.

If you'd like a space to process what you're going through, to be honest about how you really feel, and to find your own way of living with whatever you're facing—I'm here.

About the author

• Mind: Living with a long-term physical health condition
• Charmaz, K. (1995). "The Body, Identity, and Self: Adapting to Impairment" — The Sociological Quarterly
• Bury, M. (1982). "Chronic illness as biographical disruption" — Sociology of Health & Illness