One of the more painful aspects of living with a health condition is not always the condition itself. Sometimes, it’s the reactions of other people. You may have spent months adjusting to symptoms, navigating appointments, managing uncertainty, or coming to terms with a diagnosis. Yet a brief comment from someone else can leave you feeling surprisingly hurt, frustrated, or alone. Not because it was particularly cruel. In fact, it may have been said with the best of intentions. Perhaps it was:
- “But you look fine”
- “At least it’s not worse”
- “Have you tried…?”
- “Everything happens for a reason”
- “You just need to stay positive”
- “My friend had that and they’re absolutely fine now”.
Most people are not deliberately trying to minimise your experience. Often these comments are offered quickly, almost automatically. A response to something that feels uncomfortable, frightening, or difficult to know what to do with. Often these comments are offered quickly, almost automatically. A response to something that feels uncomfortable. The person saying them may genuinely be trying to help. And yet, something about them can leave you feeling more alone than before the conversation started. Living with a long-term health condition often means becoming familiar with this experience. Not just managing symptoms, treatments, appointments, or uncertainty, but navigating the reactions of other people. Sometimes it can feel as though you’re carrying two things at once: the reality of your condition and the task of helping other people understand it. That can be exhausting, frightening, or difficult to know what to do with.
The conversation you didn’t expect to have
For many people, there comes a point where talking about their condition begins to feel complicated. Perhaps you tell someone how difficult things have been recently and they immediately begin suggesting solutions. Perhaps you mention feeling tired and are met with a story about someone who had it worse. Perhaps you finally decide to open up about your fears, only to hear: “You’ve just got to stay positive”. What can be difficult about these moments is that they often miss the thing you were really looking for. Not advice. Not reassurance. Not perspective. Just understanding. A sense that somebody has heard you. That they are willing to sit alongside what is difficult without trying to make it disappear. When that doesn’t happen, it can leave you feeling unseen.
“Maybe there’s no point explaining”
Over time, these experiences can begin to shape the way we relate to other people. Not always consciously. You may notice yourself becoming more selective about what you share. You might stop mentioning symptoms. You might tell people you’re “fine” when you’re not. You might avoid conversations altogether because it feels easier than explaining. Sometimes this develops gradually. A part of you begins to expect that people won’t really understand. Not because you’ve become cynical, but because you’ve been disappointed enough times that your mind has started trying to protect you. This is something I often hear from clients. A feeling that they are carrying experiences that don’t easily fit into everyday conversation. How do you explain the uncertainty of waiting for scan results? How do you describe fatigue to someone who thinks being tired and chronic exhaustion are the same thing? How do you talk about living with a condition that affects every part of your life when most people only see you for an hour over coffee? These are not easy things to put into words.
When people are trying to make sense of their own discomfort
One thing that can sometimes help is recognising that people’s responses often tell us more about their own discomfort than about our experience. Most of us find suffering difficult to witness, particularly when there is no obvious solution. When someone we care about is struggling, we naturally want to make it better. We want to reassure. We want to fix. We want to offer hope. The difficulty is that when illness cannot be fixed, those attempts can sometimes land as minimisation. Not because the person doesn’t care, but because sitting with uncertainty is uncomfortable. For them, as well as for you. Understanding this doesn’t necessarily stop comments from hurting, but it can sometimes soften the feeling that you are somehow responsible for helping everyone understand perfectly.
Choosing where your energy goes
Living with a health condition often requires careful decisions about energy. Physical energy. Emotional energy. Mental energy. One of those decisions may be choosing who gets access to your story. Not everybody needs the same level of explanation. Some people earn your openness through their willingness to listen. Others may only need a simple version. There may be some people with whom no amount of explanation ever feels enough. That can be painful to acknowledge. Particularly when those people are family members, friends, or colleagues. However, part of adjustment sometimes involves recognising that protecting your energy is not selfish. It’s necessary. You are not obliged to educate everyone. You are not responsible for making other people comfortable with your reality.
Finding words that feel true
Many people find themselves caught between saying too much and saying nothing at all. Having a few simple phrases prepared can sometimes make these moments easier. Not because they change the other person’s response, but because they help you remain connected to your own needs. Perhaps:
- “It’s a bit more complicated than it looks”
- “I appreciate you’re trying to help”
- “I’m not really looking for advice right now”
- “I’d rather not talk about it today”
Sometimes a boundary is the kindest thing we can offer ourselves. Not every conversation requires a detailed explanation. Not every misunderstanding needs correcting. And not every opinion deserves your energy.
The importance of being understood
One of the quieter losses that can accompany illness is the feeling of:
- no longer being fully known by the people around you,
- being seen only in part,
- having experiences that remain largely invisible.
This is why finding people who are willing to listen matters so much. Not because they always say the perfect thing, but because they stay curious, because they don’t rush to fix, because they allow your experience to be what it is. Sometimes those people are friends, sometimes family, sometimes people who have walked a similar path themselves. Sometimes they are found within the therapeutic relationship. There is something profoundly relieving about no longer having to explain why something is difficult, about being met with understanding rather than advice, about having a space where your experience doesn’t need to be defended, justified, or simplified.
Final thoughts
Living with a long-term health condition can be lonely at times, particularly when the people around you don’t fully understand what you’re carrying. If you’ve found yourself withdrawing, feeling frustrated by others’ responses, or struggling with the emotional impact of being misunderstood, you’re not alone. These experiences are far more common than many people realise. Therapy can offer a space where you don’t have to edit, minimise, or explain away your experience. A space where you can talk openly about the realities of living with illness and explore the impact it has had on your relationships, your sense of self, and your emotional wellbeing. If this resonates with you, you’re very welcome to get in touch.