Things People With Invisible Illness Wish others Knew

We know they mean well. We know the questions come from love, and the suggestions come from wanting to help, and the silence sometimes comes from not knowing what to say. We get it. This is hard to understand from the outside because from the outside, we often look completely fine.

So here's what we wish we could say out loud without it turning into a whole conversation.

Fatigue is not the same as being tired.

When you say you're tired, you mean you need a good night's sleep. When we say we're fatigued, we mean our body is running on something other than fumes and sleep doesn't fix it and we've already tried going to bed earlier, yes, thank you. They are not the same word. Please stop treating them like they are.

No two of us have it the same.

You might know someone else with the same diagnosis. That's nice. But their experience is not our experience. Our symptoms, our triggers, our good days and bad days, they're ours. We are not in a competition for who has it worst, and we are definitely not losing to your mate Dave who runs marathons with the same condition.

"Oh my aunty's cousin's neighbour has that and she…" is not the comfort you think it is.

We know you're trying to connect. We know it comes from a good place. But what we hear is, someone else with your condition is doing more than you. And we carry enough of that voice in our own heads already without it showing up at brunch.

Taking five minutes to learn about our condition means more than you will ever know.

You don't need a medical degree. Just Google it. Read one article. Ask one real question. The moment someone says I read a bit about it, is that what it's like for you? … it changes everything. It says: you matter enough for me to try. Genuinely, we will think about that moment for years.

Chronic means chronic.

It doesn't go away. We're not going to wake up one day fixed. There is no finish line. This is the condition of our life, not a chapter of it. Please stop waiting for us to be better. Please stop wondering why we're not better yet. We wonder that too, and it's heavy enough without the question coming from someone who just saw us looking fine at a birthday party last weekend.

Plans change last minute. It's not personal.

We made those plans fully intending to keep them. And then our body had other ideas and we had to choose between pushing through and paying for it for days, or cancelling and feeling guilty about it for just as long. We are sorry. We are not flaky. We are just negotiating with something you can't see, using a currency you don't know we have.

We have to manage our energy like a budget we can't overdraw.

Everything costs something. A big day means a recovery day. A good week sometimes means a bad week follows. We are constantly doing invisible maths that would exhaust you just to look at. Please don't ask us why we didn't just do the thing while we had the energy. We were saving it. For this. For you, actually.

Sometimes symptoms get worse. That's not failure.

Invisible illness isn't a straight line. There are flares and setbacks and periods where things get harder for no clear reason. When that happens we don't need to be reminded of what used to work, or asked if we've tried the thing. We have tried the thing. We've tried all the things. We have a spreadsheet.

We want empathy. Not solutions.

You cannot fix this. We know that's frustrating because you love us and doing nothing feels wrong. But that sounds really exhausting does more than any suggestion ever could. Sit with us in it for a minute. You don't have to fix anything. Just stay.

We are still the same person.

The diagnosis didn't replace us. We still have opinions and humour and things we care about that have nothing to do with being unwell. Ask us about those things sometimes. Let us just be a person for a while. We're quite good company, actually. When we have the energy.

We want to be seen beyond our diagnosis.

We don't want to be defined by it. We don't want every conversation to start with how are you feeling in that tone. You know the tone. We want to be known, fully, properly known, as someone who also happens to be managing something hard. Not the other way around.

It's lonely.

Even when we're surrounded by people who love us. There is a particular loneliness that comes from living inside an experience nobody else can fully see or feel. We're not saying this to make you feel bad. We're saying it because sometimes just having it acknowledged out loud is its own kind of relief.

You don't have to understand all of this perfectly.

You just have to keep showing up.

That's more than enough.

The Quiet Support Project | thequietsupportproject.com

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