Why Are Chronically Ill People Forced to Hide Their Pain?

And what would happen if we stopped hiding and showed the world the depths of our suffering?

When you’re chronically ill, pain becomes your constant partner. It’s always there. Our “baseline” is exhaustion, depletion and often tremendous suffering. We learn to adapt to it because we don’t know anything else. We don’t know what it’s like to wake up pain free, bursting with energy and ready to greet the day. We don’t know how it feels to be able to just trust that your body can do what you need it to do. We don’t know comfort, relaxation or safety.

When you live like this for long enough, you become incredibly skilled at hiding the pain. You learn to deliver a convincing “I’m fine” and smile through things that would make a non-disabled person crumble to the floor.

You learn to push your body and your mind way past any reasonable limits, because if you don’t push you would quite literally never get out of bed.

You learn to avoid hospital visits and ER trips, because if you went every time you were sick or hurting, you would never be anywhere else.

This phenomenon is hard for the non-disabled to understand. They ask us things like ‘are you feeling better yet?’ which show a complete lack of awareness into the nature of chronic illness. There is no ‘better’. We are sick every single day.

There might be good days and bad days, but even the ‘good’ days are marred with more suffering than your average person can possibly comprehend.

I often ask people to think about the sickest they ever were. Whether that be a flu, a surgical recovery, a trauma etc. Imagine the feeling of laying in bed in pain and discomfort, dreaming of tomorrow when you would likely feel a little bit better.

‘Tomorrow’ is a gift that the chronically ill never get to receive. When you’re temporarily sick, you know that it’s going to improve. You can rest and recharge because you have the knowledge that the next day will be a little bit better. Each day there will be progress until you’re completely ‘fine’ again.

Now imagine you didn’t have that knowledge. Imagine that your worst day, the sickest you ever were, was how you felt every single day. There’s no relief. There’s no hope for a better ‘tomorrow’. You simply have to adjust and accept that suffering is your new baseline.

Sounds scary right? It’s because it is. No one wants to live with unrelenting pain and suffering. No one ‘chooses’ chronic illness. It chooses us.

Make no mistake about it, we scare people. They don’t want to face the fact that there are folks so sick they will suffer every day, but their conditions won’t necessarily kill them. They will simply rob them of their quality of life, autonomy and freedom and make them live in the grey forever.

Non disabled people understand terminal illness. They can process a disease that makes you sick and then you die. They can process a temporary ailment or injury where you’re sick and then you recover. They struggle with chronic illness. Processing the reality of living in the grey forever is hard for them.

Many will attempt to compliment us by saying ‘I don’t know how you do it! I could never cope with what you do.’ They don’t understand that it’s not a compliment. No one asked for our consent to live this way. We weren’t given a choice. We didn’t decide that we wanted to be in constant pain. It just happened. We have to cope because there’s no alternative.

The truth is that many of us aren’t really coping. We’re certainly not thriving. We’re just barely surviving. We’re doing whatever we can to help our bodies get through one more day, and you would too should you become chronically ill. You think you wouldn’t be able to handle it, but you would be surprised at what the human body can endure.

Image Description: Image of a girl dressed in white sitting on a black stool looking out a window.

Unfortunately most people can’t process the lack of choice in the matter. They genuinely believe that we either want to be this sick, or could get better if we really ‘tried’. They believe they wouldn’t be able to handle what we go through, because they’re convinced they will never NEED to handle it. They’re the exception. Chronic illness won’t happen to them.

This is the comfortable lie that most people tell themselves so that they can move through life without having to think about the precarious nature of the human condition. Without having to consider how quickly you can become disabled, homeless, an ‘other’. How quickly your life can change without your consent.

This need to cling to a lie makes people abandon us. Some will stay when you become chronically ill, but most have an internal clock. If you’re not better by whatever random and pre-conceived timeline they’ve set for you, they walk away.

The ones who don’t walk away will often gaslight and blame you to the point where you’re forced to cut ties with them.

The result is a lonely life where most friendships and connections exist online with other disabled people, because they’re the only ones who really understand the experience of living in a body that hurts all the time.

When you’re abandoned and judged over and over for being chronically ill, you learn to hide your pain. You realize that the more effectively you hide your disabilities, the less people will abandon you.

Why Do We Hide Our Pain?

We’ve been conditioned by society that pain is weakness. That being sick is something you can ‘overcome’ by simply trying harder. If you can’t overcome it then you better do everything you can to hide it because people do not want to see it. In fact, I had someone tell me I needed to hide my disabilities because my sickness was interfering with their ‘joy.’ You can read about that here:

We 'Don't Do Sick'... If You Can't Hide Your Disability We Don't Want to See You

This starts at a very young age. Attendance awards are given out in school and kids who miss multiple days are often punished. Children are forced to participate in gym and sports and teased if they can’t perform well. Those who choose quieter activities like reading or writing are often branded ‘geek nerds’ and ostracized from their classmates.

We value physical prowess and appearance above all else, and we have a distinct disdain for disabled people. Ableism is a heck of a drug. If you’re a chronically ill kid, you learn quickly that you should hide your suffering. If your illnesses are invisible you realize that you will be treated better if no one knows that you’re sick. You begin to learn how to mask. How to smile through the pain. How to deliver a very convincing ‘I’m fine’.

The Pain You Can Not See

In many ways chronic illness is like an iceberg. Ninety percent of it exists below the surface, away from prying eyes.

Most people will only ever see a small percentage of our pain and suffering, because the rest of it is kept in the shadows. It’s hidden from view as a form of self preservation, so that people will ‘tolerate’ us. So they won’t abandon us. So they won’t fear us.

The problem with hiding our pain is it gives the world an inaccurate concept of chronic illness. It makes it easier for them to assume we’re faking, not ‘really that sick’ or that we can push through our suffering when we really want to.

It disappears us, minimizes our plight and makes it harder to find allies who will support us through all of life’s ups and downs. It helps people cling to the comfortable lie.

What if we stopped hiding? What if we said, loudly and proudly, this is who we are and we ARE suffering. We’re in pain. We’re scared. We’re exhausted. Look at us. Don’t look away.

What if we demanded visibility. Insisted on taking up space. Refused to say ‘I’m fine’ when we aren’t.

What if we put our focus and energy into being our true authentic selves, suffering and all, so that people could begin to process and understand the realities of chronic illness?

In the spirit of increasing visibility, I’m going to share some of the things that most people will never see:

• You won’t see how many days it takes us to ‘recover’ from a doctors appointment, social visit or flare up.

• You won’t see the hours we spend fighting for medical care, arguing with insurance and coordinating appointments with specialists.

• You won’t see the tears we shed when the pain becomes too much and we have to stop everything we’re doing and go back to bed.

• You won’t see the hours spent feeling guilty that we had to say ‘no’ to something we really wanted to do because our body simply couldn’t handle it.

• You won’t see the middle of the night ER trips that exhaust us beyond belief and all too often end in utter heartbreak, defeat and dismissal. You won’t see our frustration that even healthcare workers don’t understand chronic illness.

• You won’t see us agonizing over whether we should shower or eat on any given day, because there’s simply not enough energy to do both.

• You won’t see us steeling ourselves to ask someone for help because it’s been a week since we were able to wash our hair, do our dishes or complete other tasks you do without a second thought.

• You won’t see us clutching walls to keep from falling down, laying on the floor because the fatigue became too extreme, or otherwise accommodating our tired bodies when we’re alone and trying to function.

• You won’t see the heartache when we wake up thinking ‘today is going to be a good day’ only to immediately be crushed by the reality that it’ll be another day of monotonous suffering.

• You won’t see the sweating, the throwing up, the hours spent stuck in the bathroom because we’re too sick to leave the toilet. You won’t see the days spent in bed without food, baths or even the ability to watch TV.

• You won’t see the dark circles under our eyes, the pale clammy skin and the hollowed out shell of who we once were.

• You won’t see us waste precious energy trying to figure out how to make ends meet because we’re living below the poverty line and often forced to choose between food, medications or shelter.

• You won’t see the fear over who will abandon us next. The constant dread that if we complain too much, ask for help or don’t hide our suffering, more people will leave us behind.

• You won’t see the regret that we weren’t able to do more with our lives. That we didn’t get to have our dream job, take that vacation, get married or have kids. That chronic illness stole our future.

There’s so much you will never see because we’ve become good at hiding it. We choose our moments with others carefully. We rest up in advance, save as many ‘spoons’ as possible and fake being well. We don’t show you the grim realities of chronic illness.

It takes a significant toll. The amount of energy I’ve wasted trying to ensure people don’t see the depths of my suffering is, quite frankly, ridiculous. It’s not doing me or them any favours.

As a result I’ve decided to reject the notion that we should have to hide our pain for the comfort of others, and I encourage others to join me. Let’s try and get comfortable showing others the parts of us we’ve been trained to hide for so long. Let’s learn to not reflexively say we’re ‘fine’ when we are anything but.

Photo by Cassie Matias on Unsplash

Image Description: A photo of a large iceberg with mountains behind it and grey icy water.

Let’s Let People See.

Here’s something you may not know about those of us with chronic illness or disabilities, we know you don’t want to see it. We know you don’t want to hear about it. You don’t want to face our suffering. You want to pretend it doesn’t exist. You don’t want to think about the cruel and unrelenting nature of chronic illness. 

The truth is, we don’t want to think about it either. But we have no choice. We face it every day. Come rain or shine. Good days and bad days. With and without support. There’s no escaping chronic illness. You never get a break. You can’t take a vacation. You can’t show up at the doctor and have them swap out the parts of you that aren’t working. You can’t ‘try harder’ your way out of chronic illness.

I’m done hiding. I’m not fine. I want people to see. Only through seeing and understanding our struggles will people begin to be capable of providing real compassion, support and allyship.

I genuinely believe that if we start showing others the harsh realities of chronic illness, they may start to better understand a life lived in the grey. They may become better caregivers, friends and supporters. They may start to care more about disability rights and social supports. They may join our fight.

I’m going to try to be better about sharing my worst moments in addition to sharing the best ones, because I want people to know they’re not alone. There’s nothing to be ashamed or embarrassed about.

We are doing our best to survive, and that makes us warriors. 

Some Simple Ways You Can Help the Chronically Ill Person in Your Life

• Try not to ask ‘are you better yet?’ Instead you can say ‘how are you doing today?’ or ‘is there any way I can support you?’.

• Listen with genuine empathy and curiosity when someone opens up to you. Don’t immediately try and discount their experience or tell them that they ‘just need to do (insert random advice here)’.

• Try and work on your own internalized ableism. We all have it, and as we begin to dismantle it we can become better equipped to help people living with disabilities.

• Wear a mask! Masking is a simple and powerful act of compassion and solidarity. Our baselines mean everything to us, and wearing a mask shows that you know it’s important not to make us sick and cause any unnecessary suffering or setbacks.

• Look for practical ways to help. It can be really hard for us to ask for help, and when you volunteer or ask us what we need, it means the world to us.

• Deliver a meal, offer to pick up groceries or clean our home. Maybe do some laundry or change someone’s sheets. Provide a ride to a doctors appointment or offer to go with them to the hospital.

• Become an advocate for disabled people in healthcare settings. It’s important we don’t attend appointments alone, as having an advocate drastically improves outcomes.

• Believe us. Validate our experience and our suffering. Don’t assume you know better, we’re faking or we ‘want’ this existence. A huge part of being an ally is a willingness to accept our reality and help us work within it.

Above all else, practice kindness and compassion always. Remember that disability can happen to anyone at any time, and we can all use a helping hand. By reading and engaging with disabled and chronically ill writers, you’re taking an important step towards learning more about our lived experience.

To my fellow chronically ill readers, keep up the fight. Don’t be afraid to show people who you really are and what you’re going through. Let’s take the leap together and start demanding more visibility and awareness.

I invite others to join me in sharing their struggles. In shining light on the realities of living with chronic illness. Drop a comment, write your own story or send a message.

Together we can raise awareness and increase visibility. We can help others understand that we aren’t fine, that we can’t magically get better and that part of supporting the chronically ill person in your life is letting them be their authentic self at all times.