Living With Something That Stays

The First Chapter: The Story Arrives Before the Reality

When a diagnosis first happens, the reaction is often shaped more by culture than by personal experience. Public narratives, outdated information, stigma, and fear can all rush in before any real understanding has time to form. The diagnosis can feel louder than your identity. It may colour how you speak about yourself, or make you second-guess what others might see or assume. This stage isn’t dramatic — it’s human. It is the period where meaning is still being formed.

Over time, the noise settles. And the meaning begins to come from you, not the story you inherited.

The Long Chapter: Life Reasserts Itself

Life continues. Not in a triumphant way — in an ordinary way. Medication routines become familiar. The language of your body becomes clearer. You learn when to stretch and when to rest. You learn which environments support you and which drain you. Treatments can extend and stabilise life, and that matters. But treatments can also bring their own long-term impacts: fatigue, digestive shifts, aches, inflammation, or slow wear on the organs. Naming this is not negativity. It is honesty. Reality has texture, and acknowledging that texture is part of living rather than enduring.

Facing Mortality (Even When Life Goes On)

Some conditions require us to think about death earlier than others do. Not as a concept, but personally. When I was diagnosed, the cultural story surrounding HIV still sat in the shadow of previous decades. Even as treatment was evolving, the emotional assumption was that life would be shorter or conditional. There was a moment where I thought, almost casually, “Maybe I should go to Disneyland and make the most of the time.” I didn’t go — because what needed to change was not my itinerary, but my relationship with time.

Once you have looked directly at your own mortality, you cannot un-know it. But the outcome is not constant fear. The outcome is clarity. You start to make choices with intention. You become more honest with yourself. You allow rest. You stop postponing what matters. You also stop forcing urgency where it isn’t needed. Living becomes something you do on purpose.

Identity Doesn’t Break — It Adapts

There is a common phrase about “before and after” — but identity rarely shifts in clean splits. Life becomes a series of chapters: before you knew, the chapter of adjustment, the chapter where things become ordinary again, and the chapter yet to come. Through all of it, you remain yourself. Your humour doesn’t vanish. Your character doesn’t dissolve. Your values don’t evaporate. What changes is pacing, capacity, and the understanding of yourself in relation to your body and your limits.

The Weight of Stigma: Inside and Outside

Stigma doesn’t always show up as direct prejudice. Sometimes it’s the pause, the lowered voice, the unnecessary sympathy, the quick assumption, or the tightening in a conversation. Over time, you learn to read this. You learn to recognise who is safe to be fully visible with and who is not. This is not secrecy. It is discernment. It is knowing your dignity is not up for negotiation.

External attitudes change over decades. Public narratives soften. Awareness improves. But your body and memory may still hold earlier chapters. You are allowed to move at the pace of your experience — not at the pace of cultural messaging.

Relationships, Intimacy, and Being Known

Living with something long-term makes relationships more deliberate, not more difficult. You learn to pay attention to whether someone can sit with reality without making it about themselves. I remember being on a date once. I hadn’t shared my status yet — disclosure, for me, is a conversation that happens once emotional safety has been established, not a disclaimer at the door. The person mentioned someone we both knew and said, casually, “He has HIV — that must be awful.” My face changed. Not dramatically. But enough.

In that moment, the question wasn’t whether I should tell them. The question was whether they were capable of meeting me where I actually live. That’s not fear. That’s self-respect. And this isn’t unique to HIV. Many long-term sexual health conditions, like herpes or hepatitis, come with their own emotional timelines and relational considerations. The specifics differ. The inner work — of pacing, choosing, and discerning — is often shared.

Intimacy becomes something chosen carefully, not withheld. Contact becomes more honest. Connection becomes real rather than assumed.

When People Step Closer — and When They Step Away

Living with something long-term doesn’t only change your relationship with yourself; it also changes your relationship with others. Some people will stay. Some won’t. And the difference is rarely about the condition itself — it’s about what people are able, willing, or equipped to sit with.

I’ve seen when people have became unwell and was sectioned, and the behaviour in the months leading up to it was confusing for people on the outside. There was distress, disorganisation, moments that didn’t fit who they had been publicly. I watched how quickly people who had called themselves friends backed away. Not out of malice, but because they didn’t know how to hold the reality of what was happening — and they didn’t want to learn.

This experience is not unique to mental health. It happens around chronic illness, disability, grief, addiction, neurodivergence — anything that disrupts the image of “everything is fine.” People often withdraw not because you have changed beyond recognition, but because your situation confronts them with something they don’t know how to handle in themselves.

This is one of the quieter griefs of long-term conditions; you lose not only ease, but sometimes company. And yet — what remains can be more honest. The people who stay are those who can sit with complexity, who don’t need you to be simple or easy or inspiring to be worth loving. The friendships and relationships that survive this thinning are often deeper, steadier, and more real than anything that came before.

Social thinning is painful — but it is also clarifying. It shows you whose presence was conditional, and whose care is rooted in recognising you, not managing you. It’s not about blaming those who leave. It’s about valuing the ones who stay. And the ones who arrive later — because they recognise you as you are now, not who you were before.

Responsibility and the Reality of Risk

For those of us who lived through the era before U=U was understood and accepted, the awareness of risk was once constant. Even now, when undetectable viral load means no risk of transmission, the history of earlier years sits quietly in the background. That awareness isn’t shame. It is care.

Responsibility in intimacy does not diminish connection — it deepens it. It creates relationships where consent is not just spoken, but lived. Where care is mutual. Where the body is not incidental, but acknowledged.

You Don’t Have to Be Inspirational

There is pressure, sometimes, to turn long-term conditions into lessons of resilience or transformation. But you do not need to be inspiring. You do not owe anyone gratitude for what changed your life. You can simply live your life as it is — with complexity, humour, frustration, ordinary days, meaningful days, and days where nothing needs to be said out loud.

Why Therapy Helps

Therapy doesn’t remove the condition. It doesn’t demand acceptance or positivity. It offers somewhere you don’t have to perform. Somewhere your pace is respected. Somewhere your life can continue to unfold without being reduced to a narrative of tragedy or triumph. Therapy supports the ongoing part — the living.

living with the long term

Living with something long-term is not a story about loss or overcoming. It is a life being lived. There is room in it for depth, playfulness, quiet, intimacy, tiredness, joy, and rest. You are not the condition. You are the one who carries it. And you are allowed to carry it in a way that is kind to your body, your boundaries, and your pace.