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 that can’t be seen – their illness is invisible. And many people who have invisible illnesses don’t get the support they need.

The Symptoms Are Invisible But the Illness is 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, depression, anxiety and guilt are all real

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.

How to support someone who has an invisible illness

My Visible and Invisible Illnesses

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 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. I wanted it to be invisible. I wanted to be invisible.

One of my other conditions, trigeminal neuralgiais 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. Nor can they see the horse which keeps kicking my cheekbone. They can’t see the knitting needle stabbing my eye. And they can’t see the pliers which are twisting, turning and pulling at my teeth.

People 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.

Click here to find out what trigeminal neuralgia feels like

Sometimes Being Invisible is Better

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 – my face would be 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 if they could see my pain.

Thankfully, I don’t have to see it myself every time I look in the mirror because 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.

Nobody Knows if Someone is Living With an Invisible Illness

Because I try to raise awareness, I talk and write about my pain. But most people don’t do that. So we have no way of knowing if someone is living with an invisible illness.

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

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. Nobody can see their pain or the torment that’s going on inside their head. Nor can we see the worry or sadness that might lie behind their smile.

We Don’t Know What People Are Dealing With

When we 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 been made redundant. 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.

How should we treat people. Picture of a yellow flower.

People don’t have labels on their foreheads

People don’t walk around with a label on their forehead informing everyone of their illnesses or their worries. They might have an invisible illness or they might be laden with worries so perhaps we all need to learn to be a little more thoughtful. If we treat everyone as though they do have an invisible illness, we could make their lives better.

A little bit of kindness, empathy, compassion and patience can go a long way in this world.

Do you have an invisible illness and struggle to get support? 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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62 thoughts on “How to Support Someone who has an Invisible Illness

  1. Great post. My wife suffers from IBS as well as fibroids, and she is often in pain after eating certain meals or during her monthly cycle. I have a disc that likes to slip and cause me pretty sharp pain if I bend the wrong way, but I’ve been working out and I also have a standing desk now, so I try to stand for most of my day to help with that. You never know what some people are going through, so all you can do is offer your compassion and support. NEVER give them the impression that it’s all in their heads, no one wants to hear that, especially when they’re in excruciating pain.

      1. Kim Krause

        You are so right! I have friends that know other people with fibromyalgia as an example, they have great empathy for them but really don’t seem to acknowledge the state my life is currently in with bilateral tn1 and tn2 with osteoarthritis in my face aswell. It kind of hurts but I understand the unintentional ignorance. We need to be louder and like you say, explain it when the opportunity is there. I work hard on awareness. It would just be nice for my loved ones to do what it takes to understand. I still feel like Im just a bother more than anything else.

        1. Hi Kim, I’m sure your friends and family don’t think of you as a bother x You do work really hard on awareness, so it must be difficult when you feel that people don’t understand.

  2. lforsythe7040

    Stories like yours are important to tell because people don’t understand unless they or a loved one has experienced an invisible illness. It’s hard to fathom how someone can look perfectly fine and be feeling horrible if a person has never experienced that. It’s so important that we don’t judge someone without knowing them.

  3. erica3639

    I have a friend with fibromyalgia and she had to go to the doctor recently to be denied pain meds. The doctor told her she had to train her mind to understand the pain isn’t that bad. Yet cancer doctors throw prescriptions at you like candy or confetti. I hate seeing someone I care about with the invisible illness be treated that way. Yet the one with the illness that shows up on an X-ray is the absolute opposite. Your post needs to be shared everywhere because kindness goes a very long way. We never know what others are dealing with while putting on a brave face.

    1. Tom

      I have TN and early on in my journey spent about a week (of my own volition) telling myself it was all in my mind, the pain wasn’t real and if it was it wasn’t as bad as I thought. It just tired me out even more than I already was. It actually worked for about 6 hours, but then the pain was bad to “normal” and I was just mentally exhausted. When I first went to the doctors, I found they didn’t listen. Fortunately they publish their notes through mychart, and I was able to see what they wrote. The next time I went, I had to write our my pain and the fact that it felt like someone was drilling into my gum with a 1″ spade bit (I’m a woodworking, that is where my mind went). At that point and because I couldn’t talk without triggering agony, they took me seriously.

      Thanks for this, it really hit home for me.

      1. Hi Tom, I’m sorry that you’ve also got TN. Writing about the pain with an explanation like that is a great way to get a doctor to understand. Hope you’re having an ok day.

    2. That is terrible. You can learn ways of coping, but it’s wrong of a doctor to tell her to train her mind to know the pain isn’t bad. If it were that easy, there would be no need for doctors.

  4. Invisible pain at times are taken as people faking.For the last month and a little more, I was having a back pain but I told no one except the doctor.I feel for you & pray for you. May God give you relief is my wish.Please take care.

  5. You are so right about all the issues that come with invisible illness, such as not being believed by doctors or made to feel guilty or like a liar by others who can’t see what they’re coping with, are awful to have to deal with on top of the illness(es) themselves. I’m so sorry about the trigeminal neuralgia you have, though you have described it so well, it sounds like an utter nightmare of epic proportions. We really don’t have a clue what’s going on in someone else’s life or how they’re feeling, unless they talk about it, and even then it’s likely a moderated version of events.

    When I talk about my pain, I’ll underwhelm with what I say and make it out to be not so bad, even if it’s totally flooring me and the exhaustion has left me dragging myself around. It’s what people choose to tell others, and what they may hold back for whatever reason. I feel, for instance, that people don’t want to know about it, won’t take it seriously, already have their own problems to deal with, or may just think I’m over exaggerating if I tell the truth.

    There’s always more to the story and far more than meets the eye. You have nailed this so well. Such important points to raise awareness of, you’ve done a great job.
    Caz xx

  6. This post is right on time! As a sufferer of 3 invisible illnesses, it sometimes feels like people don’t believe me when I’m experiencing discomfort or pain. That can be really frustrating, and sometimes people just don’t understand.

  7. Swagata Sen

    I am really sorry for the enormous amount of pain you have to go through silently. But at the same time, I am happy that you have a diagnosis and know what exactly is wrong with your body. There are some rare and invisible conditions are very difficult to diagnosis , and there symptoms are referred by the physicians as ‘functional’ or psychological! That is so sad and unfair. Pain of the trigeminal neurolagia is very sharp and severe, and very diffucult to explain to people who are not aware of it. I appreciate your efforts of creating awareness about this condition, and the silent pain the patients have to go through!

  8. Lindsay Rae

    This was a beautifully written article and it brings to light an issue that, your right, does not get enough credit. I’m so sorry to hear about your struggles with these illnesses, but I really do thank you for sharing your stories. My son has anxiety and suffers with it daily. When he gets upset in public I can feel the judgement of those around us.

    Everyone does deserve empathy and compassion. We shouldn’t be so quick to judge those who do not act the same as us.

    Wonderful post, thanks for sharing it with us!

  9. Looking through the comments on your blog, so many people have come out and shared their invisible illness, or that of someone they knew. Your story is strengthening so many people. I think that everyone has something hidden below the surface, and yes we can make a difference with compassion. When my son was six months old I had late onset post partum depression. It was the small acts of kindness by strangers that got me through a tough period of time: the woman who held the door for me, the teenager who played peekaboo with my son, the person in line behind me that asked if I was OK. Somehow strangers noticed what the people closest to me missed. Strangers who acted the way you suggest.

    1. It’s true, sometimes the people closest don’t notice things. Perhaps because it’s a gradual, rather than a sudden change. That must have been such a difficult time for you.

  10. I so greatly appreciate your posts for sharing with us, the readers, about your life and providing the insight to all the things we don’t see in the lives of those around us. I love how to crossed out “invisible illness” in your picture about how to treat others around you. We never know what someone else is going through and everyone deserves understanding, kindness and respect. Take care!

  11. Kindness and compassion are everything. You never know what types of invisible illnesses are hiding behind a person’s facade. Some people try so hard to be strong and stoic when sharing and accepting help would make a huge difference. If someone does share with you, believe them and ask how you can help.

  12. Luna S

    I 100% agree, just because you can’t see it doesn’t mean it isn’t real. My step-dad has a bad heart and you can’t tell by looking at him because he looks perfectly normal, so he gets a lot of rude stares when he is out and parks in handicap spots or is on his mobile scooter (both of which he medically needs).

    1. It’s awful when people do that. Nobody should feel they need to discuss the reason that they need those parking spots or mobility scooters. It’s between them and their doctors.

  13. angienh86

    It’s so true! I have two kiddos with autism and when they were younger people always assumed they were spoiled kids. But really they were just having sensory issues and it was just over stimulated.

  14. This is really profound. I fully agree that we should all be making an effort to treat everybody with kindness, respect and compassion. We never really know what somebody is going through behind closed doors. I’ve been dealing with chronic migraine for the last few years. It has been a struggle. But I have seen so much compassion from people, it has restored my faith in humanity and has alerted me more to be aware of others who also may have invisible illnesses whenever I’m out in public too. There are some signs that we will recognise because we’ve gone through it ourselves. Thank you for sharing this.
    Tasha M

  15. This is such an amazing article. I did not know anything about trigeminal neuralgia so I had to google it to find out about what it is. You shared such an experience. Thank you very much for writing this article.

  16. LOVE THIS POST!!!!!! My favorite part is the transformation you make within this very post, and that at the end you changed the pin – crossing out invisible illness and writing everyone. This message needs to be read fully by everyone! Beautiful words.

  17. Cheryl-Radiant Nu Beginnings

    I know about this one!! I have three invisible diseases. Only last week, my doctor told me to put up with a new symptom I’m having, as nothing they can do. It’s tiring having to keep proving that you’re not well. For a lot of us with invisible diseases we accept there’s no cure, but at times it’s nice to know if a particular new symptom is being caused by our diseases.

  18. Kathleen Spencer

    A powerful message. It’s all we with invisible illnesses need…we just want people to have compassion instead of being quick to judge. I don’t want pity, I don’t expect you to do anything for me, just be kind.

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