9 things people who live with an invisible illness want you to know

(Picture: Charlotte Cockell)

Invisible illnesses, both physical and mental, are very much real. 

But sadly the sufferers of these illnesses are made to feel the exact opposite. In fact, some people living with invisible illnesses are made to feel as though they are liars. As though they are faking it.

Why? Because the illness cannot be seen. You have to take the word of a sufferer that they are not feeling well. It’s not a cast on a leg, or chicken pox.

And, because of these people who don’t take their word – and instead throw around words such as ‘lazy’, or phrases like ‘it can’t be that bad’ – sufferers end up feeling just like their illness: invisible.

Here are 9 things people who live with an invisible illness want you to know.

1. It’s real

Just because you can’t see it, doesn’t mean it’s not there. Invisible illnesses, both physical and mental, are very much prominent in a sufferer’s life.

It can even get to the point where the illness controls that person’s life. When it’s such a major thing to that person, it’s not helpful when people dismiss it as fabrication.

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2. We learn not to talk about it

We’ve learned not to talk about our illnesses. Out fear out of disbelief, patronising phrases or yet another unhelpful answer, and because we’re sick of being made to feel over-dramatic, as if it’s all in our head.

3. We feel guilty about our illness

The unhelpful comments often lead to a lot of guilt. We feel guilty when we actually find the guts to talk about the illness because we’ve been told so many times ‘there are people worse off than you’ or that we look fine.

We can start to feel bad about the symptoms the illness gives us, or guilty that we’re failing the people we care about or letting people down. And that’s not right.

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4. We find it very hard to find treatment

It’s not just the general public who don’t understand. It’s doctors, GPs, psychiatrists. Working out how to treat an invisible illness is not as easy as spotting when someone has a cold. It can often take numerous trips to seek help before anyone actually listens or reaches out to us, let alone has a diagnosis.

5. We often feel the need to go into detail about our illness

If we’re going on about it, it’s because we feel like we have to. We feel like we have to convince you that we’re ill for you to believe us. Why? Because a short description generally leads to those patronising comments I’ve mentioned above.

6. We can feel very lonely and isolated

When you feel you have nobody to talk to about what’s going on, you end up feeling really lonely and isolated. You feel like no one understands – not friends and family, nor medical professionals.

So many sufferers are made to feel stupid when seeking help for their invisible illnesses, which makes us scared to try again. This ends up making us feel as though there really is nowhere to turn.

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7. We just need someone who isn’t going to question us

Of course you don’t question your friend if they say they’ve been vomiting if you’d heard the noises from the bathroom. But our illnesses don’t come with obvious signs. So, just as you wouldn’t question your friend who’d been vomiting, it’s not okay to question the friend who’s telling you they have severe stomach cramps due to symptoms of their invisible illness, just because there’s no noises as ‘proof’.

8. We need someone who’s willing to listen

And when I say listen, I mean really listen. Not give us answers to make us feel better at the time, or daft answers that, while I’m sure are said to be helpful, only make the situation worse. We just want a friend who’s going to say ‘I’m here for you’ when we need them most.

(Picture: Getty)

9. We want there to be more awareness for invisible illnesses

Again, both physical and mental, we want to break the stigma. We want to it to get to the point where we can talk to people about our illnesses without being made to feel guilty or stupid for it. We want others to listen when we try to educate them on the fact that not illnesses are visible. We want to stop doctors shaking their heads in a scornful manner when we go to them unable to give them physical evidence of the crappy way we’ve been feeling.

We just want it to be more understood. Because the more people who feel understood, the more people feel comfortable enough to speak out. And that way, more people are able to seek the treatment they may desperately need.