All the Tears I Can Not Cry and All The Pain You Will Not See
I'm allergic to my tears - I can't cry. I've become excellent at hiding my pain. But why should we hide it? Why shouldn't we allow people to see our suffering? Ask them to face our disabilities?
This post is a special edition about crying, tears and hiding your pain. I wrote it in support of
’s collaboration project “Caring about Crying”.
First things first - did you know it’s possible to be allergic to your own tears? Yep - I literally CAN’T cry anymore. It’s incredible how this shifts your world and your approach to grief - because crying is such an important tool for processing emotions.
Have you ever been really upset about something and struggling to hold it in? When you finally let it out and have a good cathartic cry - you always feel better right? You might be a bit stuffy, red faced and tired - but the heart and soul feels lighter. The tears NEEDED to come out.
In my case - my MCAS (Mast Cell Activation Syndrome which you can read about here) has resulted in an allergy to my own tears. It developed a few years ago and I’ve been learning how NOT to cry ever since. What a weird sentence. So many of us spend our lives learning HOW to cry. How to not be embarrassed or ashamed to show emotion. How to let our feelings out in a safe and supportive manner.
It took me decades to learn how to do that - and now I’m faced with having to unlearn everything and find a way to hold the feelings in. It’s quite the conundrum and an exhausting use of my precious energy.
How Do You Know You’re Allergic to Your Tears?
In my case - it was pretty obvious. When I would cry I would get wheezy and hoarse. My cheeks would be bright red and welts would form where the tears had fallen. My eyes would swell shut and I would get extreme ear pain, pressure and tinnitus. When I finally stopped crying - I would feel dreadfully sick. Flu like symptoms such as fatigue, bone pain and muscle aches, sore ear nose and throat and gastrointestinal issues.
I was having a classic MCAS reaction to my tears. To the ACT of crying. I would need DAYS to recover from any crying that lasted longer than a few seconds.
This was an incredibly strange thing to come to terms with - because as a teen and young adult I hardly ever cried. I went to great lengths to hold it in. In fact I spent an exorbitant amount of effort learning to hide my pain. Not just to hide my tears - but to plaster a smile on my face and say ‘I’m fine’ when I was anything but.
By the time I was properly diagnosed with my various chronic illnesses - I had become so good at hiding the pain I no longer knew HOW to show it.
This got me thinking - how many of us hide our pain? Is chronic illness like an iceberg where the vast majority of people will only ever see the tip of our suffering? They will only ever see what we ALLOW them to see - which more often than not is us on our best days. Us in our best moments with the least amount of suffering.
Image Description. A black and white photo of a single tear drop
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 a family member tell me I needed to hide my disabilities because my sickness was interfering with their ‘joy.’ You can read about that here:
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 in society - 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
This is where the iceberg theory comes in. An iceberg is HUGE - and 90% of it exists below the surface of the water.
In my experience - 90% of the experience of being chronically ill exists in the shadows. Behind closed doors. Away from prying eyes. When I was still able to cry - I never let people see me do it.
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.
So in honour of
’s theme of ‘I Care…’ I’m going to do exactly that. I’m going to take a moment and share some of the things that I don’t let people see. The things I’ve been taught not to talk about.The below is just ONE example - taken from a night where I woke up sick around 4am (like I so often do). Everything my body goes through in the middle of the night is hidden from view. Not talked about. Let’s bring it into the light.
You won’t see me wake up screaming. Gasping for air because my oxygen and blood pressure have dipped too low.
You won’t see me rummaging around in the dark trying to find my emergency towel to dry myself off.
You won’t see me clutching my wall as I try desperately to make it to the bathroom before I either pass out and hit my head or have an accident.
You won’t see me laying on the bathroom floor - fighting tears because I’m allergic to them and I can’t risk further dehydration.
You won’t see me frantically trying to splash water on my face and neck to calm my racing heart - only to collapse back down to my knees because I’m too weak to stand.
You won’t see the pained look on my face as I realize I won’t be able to clean up the mess I’ve made in the bathroom or hear the inner voice telling me that I SHOULD be able to clean it up. That I’m a failure for leaving such a mess.
You won’t see me crawl back to bed in utter despair - struggling to simply lift myself up and back onto the mattress.
You won’t see me lying in bed wondering what caused this episode? What could I have done differently? Why does it keep happening? Will it ever stop?
You won’t see the agonizing look of defeat as I hug my teddy bear and try and get back to sleep - knowing full well I will wake up with a terrible “POTS hangover”
You won’t see me lay there for hours facing the existential dread of knowing what’s coming. Shoulder pain so severe I will feel like they’re being ripped from my spine (classic coathanger pain). Exhaustion so profound that I won’t be able to clean the bathroom, change my sweat stained sheets or shower.
You won’t see me finally pass out from the fatigue - only to wake up the next morning sad and disheartened that I have to do it all over again.
Image Description: A photo of a large iceberg with mountains behind it and grey icy water.
I reject the notion that we should have to hide our pain for the comfort of others - so I encourage people to join in. 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.
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’m going to try to be better about sharing the 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.
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 as
so eloquently said in her call for contributions - we can show that we care.
Image Description: A black outline of a heart on a blue/white background with text ‘can you share a’ outside the heart and ‘i care’ with a smaller red heart. Image courtesy of
I have been *practicing* telling people who ask how I am if I am better or worse than before. I don’t want to give a concrete value statement in the moment that isn’t any of their business, but I am also trying to unlearn the habit of lying about it to protect their feelings.
Thank you for letting the world in on the realities of these illnesses. People really have no idea how bad it can be. And to have a mast cell reaction to your own tears? That’s such a cruel twist. I’m so sorry, my friend.