How to support someone who has an invisible illness

Some illnesses are obvious to the naked eye. If someone is hobbling around with a plaster cast on their leg, we can tell they have a broken leg. If they have misshapen fingers, we can normally presume that they have painful arthritis.

But so many people have health conditions which can’t be seen. Those conditions are classed as being invisible.

It’s not seen, but it’s still real

It can often be difficult to comprehend that someone can live with a terrible illness or a terrific amount of pain when there is nothing to be seen. But it’s real. The illness is real. The pain is real. The fatigue, the stress, the anxiety and the guilt are all real, as are all the other emotions which accompany the illness.

But because it’s invisible, sufferers often feel that they aren’t believed – even by doctors. They often face accusations of being fakes and frauds. They feel judged, or even shamed. Very often they feel that they don’t get support, compassion or understanding simply because of the invisibility of their condition.

Those are horrible feelings to have to cope with, especially on top of the illness they are already dealing with.

My own visible and invisible

One of my main conditions is chronic back pain. My back pain is due to my scoliosis (a curvature of my spine), which started when I was about ten years old. Because of the shape of my spine and the posture I develop due to the pain, it’s not exactly invisible. I went through most of my life, especially when I was young, wishing it was. How I wished my back could have been normal, and yes, invisible.

One of my other conditions, trigeminal neuralgia, is invisible.

Nobody can see that pain. The aching pain which is in my face every day, simply can’t be seen. When I get a stab in my cheek out of the blue, I might let out a yelp and draw attention to it, but still, people can’t see the pain.

They can’t see that one half of my face feels as though I’ve been sitting too close to an erupting Mount Vesuvius. They can’t see the horse which keeps kicking my cheekbone. They can’t see the knitting needle stabbing my eye. They can’t see the pliers which are twisting and turning and pulling at my teeth.

They don’t know anything about my trigeminal neuralgia unless I tell them.

And that’s the thing with invisible illnesses.

Nobody knows unless we tell them.

I know a lot of people feel that non-sufferers would understand our health more if there was a visible symptom, but to be honest, I’m happy that trigeminal neuralgia is invisible. If it could be seen, I imagine it would be an ugly looking condition – battered, burnt, bruised and bleeding. I am glad that people are unable to see it. I could imagine pitiful looks or heads being turned the other way to avoid eye contact. People wouldn’t know what to say. They would feel awkward.

I am also glad that I don’t have to see it myself every time I look in the mirror. It’s bad enough having to feel the pain. I would hate to have to see it. I don’t need any reminders about how painful it is.

I talk about my trigeminal neuralgia a lot to try to bring awareness about the condition. My friends and family can’t see the pain. They obviously can’t feel it. But, because I talk and write about my pain, they do understand what I live with.

But most people don’t talk about their health problems. They keep their private lives private. They’re not like me, blogging and posting on awareness pages – their invisible illnesses really are invisible.

My neighbour might have an invisible illness or the teenager who served me at the supermarket checkout or the woman reading the news on the television last night. We have no way of knowing.

The truth is, we have no way of knowing what is going on in anyone’s life.

Whether it’s a physical illness, a mental health illness, or even just worries about finances or families, we simply don’t know what lies behind someone’s eyes. We can’t see their pain or the torment that’s going on inside their head. We can’t see the worry or sadness that might lie behind their smile.

We could see someone who looks reasonably healthy park their car in a disabled parking bay and we automatically think they shouldn’t be there. Or we get cross when the cashier at the garage gives us the wrong change. Or we get annoyed because our doctor didn’t seem to be listening at the last appointment.

But perhaps that ‘healthy’ person has a chronic health condition – an invisible one. He might look fine just now, but in ten minutes time, after picking up a few basics in the supermarket, he could be struggling to walk back to his car.

Perhaps that garage cashier’s mind isn’t on her job because her husband has just lost his job. She doesn’t know how they’ll feed their young children, never mind pay their rent or household bills.

Perhaps that doctor was trying to listen but was worried about the life-changing diagnosis his wife had just been given. A doctor’s aim in life is to cure people, but he feels awful because he can’t even cure his own wife.

People don’t have labels on their foreheads

Perhaps we all need to learn to be a little more thoughtful. We never know what’s going on in someone’s life, so perhaps we should treat everyone as though they do have an invisible illness. Because they might. Or they might simply be going through a rough time.

If we treat and support people as though they have an invisible illness, perhaps we could make their life a little bit better – which takes me back to the title of this post – how can we support someone who has an invisible illness?

My answer to that is – with kindness, empathy, compassion and patience. And without judgement. Surely everyone in the world deserves that?

Do you have an invisible illness? Do you wish people would treat you differently? Do you agree that we all need to learn to treat everyone in a kinder more compassionate way? Please leave me a comment below and click the buttons to share this post on social media.
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