Living with an invisible illness often means handling challenges that other people don’t see or understand.
We’re so used to making judgements based on what’s right before our eyes, so when there’s no “proof” for us to pick up on, we often make the wrong assumption, and that can be really painful for those on the receiving end. Here are some of the everyday struggles that come with an illness that many people might not notice or really “get”.
1. People assume you’re fine because you “look” fine
One of the hardest parts is constantly hearing, “But you look great!” It’s well-meaning but can make you feel invalidated because your pain or exhaustion isn’t visible. Just because someone looks okay doesn’t mean they’re not struggling. It’s tough feeling misunderstood when you’re dealing with something no one else can see. Appearances don’t always tell the whole story.
2. Feeling like you always have to explain yourself
With an invisible illness, people might expect an explanation for why you can’t do certain things or why you’re feeling unwell. Constantly explaining yourself gets exhausting, especially when people don’t really get it. You just wish they’d understand without needing every detail. Sometimes, you just need space to be without having to justify it.
3. Facing judgement for cancelling plans
Source: Unsplash Cancelling plans last minute isn’t something you want to do, but sometimes you don’t have a choice. When you’re not feeling well, going out can feel impossible, yet people may think you’re unreliable. The guilt of disappointing other people adds another layer of stress. Understanding from friends can make a big difference, but it’s not always there.
4. Struggling with energy levels that other people don’t understand
Invisible illnesses often come with unpredictable energy levels, which means that things people do easily can feel like a huge challenge. Even simple tasks might leave you drained for days. It’s frustrating trying to keep up with a world that moves at a pace you can’t match. Energy becomes a precious resource that you have to manage carefully.
5. Dealing with people’s “miracle” cures
Friends and family mean well, but suggestions for “cures” like “just try this supplement” or “have you tried yoga?” can get old fast. These ideas often don’t consider the complexity of your illness, making it feel like they’re not listening. You wish people could understand that managing your condition is more than trying a quick fix. Real support goes beyond a simple solution.
6. Feeling isolated because no one gets it
Having an invisible illness can feel like being on an island because it’s hard for anyone to truly understand what you’re going through. Even with support, it can still feel like no one really gets how it impacts you day to day. This isolation adds another layer to what’s already a challenging situation. Sometimes, a little empathy goes a long way.
7. Trying to keep up with a “normal” life
It’s tempting to push through and try to keep up with work, friends, and family, but this often comes at a high cost. The effort can leave you feeling completely drained, both physically and mentally. You’re trying to live a normal life, but your body doesn’t always cooperate. Balancing what you want to do with what you can do is a constant struggle.
8. Feeling like your pain or symptoms are downplayed or brushed off
Invisible pain or discomfort can sometimes lead people to think you’re exaggerating or that it’s “all in your head.” This kind of reaction can make you question yourself, even when you know your symptoms are real. Dealing with scepticism is draining on top of managing your illness. Validation from other people can make the journey feel a little less lonely.
9. Managing flare-ups without warning
With an invisible illness, symptoms can flare up unpredictably, making it hard to plan or commit to anything. This unpredictability can be frustrating because you never know when you’ll feel good or when you’ll be knocked out by symptoms. It’s a constant reminder that you don’t have full control over your life. Adaptability becomes essential, even when it’s exhausting.
10. Feeling guilt for needing accommodations
Asking for accommodations, whether at work or in social situations, can make you feel like you’re asking for special treatment. This guilt adds stress, making it harder to advocate for what you need. You want to blend in, not stand out, but sometimes accommodations are necessary. Accepting your own needs without guilt can feel empowering, even if it’s difficult.
11. Dealing with unreliable symptoms that come and go
One day, you might feel almost normal, and the next day your symptoms might be unbearable. This inconsistency can be hard for both you and everyone else to understand. People may wonder why you’re fine one day but struggling the next. The ups and downs add a layer of unpredictability that makes it hard to plan or make commitments. Consistency is a luxury that invisible illnesses don’t always allow.
12. Worrying that people think you’re lazy
Invisible illnesses can limit how much you can do in a day, and it’s easy for people to mistake this for laziness. If they don’t see the struggle, they might not understand why you can’t keep up. This judgement can make you feel inadequate, even when you’re trying your best. Knowing your limits is essential, even if people don’t see the whole picture.
13. Having to prioritise health over everything else
For those with invisible illnesses, taking care of their health often has to come first, even if it means saying no to things they’d love to do. This means constantly weighing up choices based on how much energy they have or how much pain they’re in. It can be tough to miss out, but health becomes the priority. Prioritising self-care is a must, even if it feels restrictive.
14. Facing stigma around mental health
Many invisible illnesses come with mental health challenges, which can bring an added layer of stigma. Whether it’s depression, anxiety, or the mental toll of chronic pain, discussing these struggles openly can feel risky. You might worry people will dismiss or judge you even more. Breaking down the stigma around mental health is key, but it’s a slow process.
15. The exhaustion of constantly advocating for yourself
Living with an invisible illness often means speaking up for yourself regularly, whether it’s with doctors, family, or work. This self-advocacy can be exhausting, especially if people aren’t listening or understanding. Constantly having to explain what you need feels like an extra burden on top of everything else. Self-advocacy is crucial, but it’s also draining when support isn’t readily there.
