One of the hardest things about invisible illnesses is that they’re – um – invisible. No one can see them. Only the person who has them knows they exist. The most common chronic pain conditions in children and teens – headache, migraine, gastrointestinal problems, skeletal issues – are trivialized.
That’s pretty awful. Anyone, anytime, can just call you a liar to your face and say you’re exaggerating your pain. Or using it as an excuse. Or that the disease that’s taken over your life doesn’t exist.
Disbelief can hit you like a slap in the face.
I remember my son coming back from school one day, just looking stung.
He’d woken up in a huge amount of pain. He was supposed to go on an orchestra field trip and I just told him it wasn’t going to happen. There’s no way his ears and that violin were going to get anywhere near each other for two hours of playing interspersed with rowdy bus rides.
He made it to school by 11. His orchestra teacher saw him that afternoon – a woman he’d known for five years. She stopped him the hallway told him he’d faked his pain to get out of the trip.
The violin was one of the many things my son lost to pain. And that interaction was a turning point for leaving the orchestra.
Pain Is All In The Head. ALL Pain.
We’ve written repeatedly here about pain physiology. Pain perception occurs in the brain. All pain.
You can’t tell someone they don’t hurt. First, because you don’t know. Second, because if that’s what they say they’re experiencing, telling them they don’t is calling them a liar.
Is that what you intended to do?
Gaslighting undermines both individuals and relationships. In the original 1944 film, Gaslight, a man tries to convince his wife she is insane by making her think she can’t trust the evidence of her own senses.
When you tell someone that they don’t feel what they tell you they do, you’re gaslighting.
You are asking them to doubt the reality of what they feel. You are mislabeling their feelings (without knowing what those feelings are). As a parent, you are asking them to trust your word over their own experience.
Nothing about that interaction is going to help them or your relationship.
Are you wondering what they are really feeling?
Have you ever said something like “It can’t be that bad”? I know I have.
Sometimes it’s inconceivable. How can something like gentle light or a quiet sound be causing them extreme pain? How can what looks like a minor injury cause what seems like a very strong reaction or a headache last for hours, days, or weeks?
“It can’t be that bad” isn’t meant to be a challenge, it’s meant to be a statement of disbelief – of the world, not of them. But that may not be what it feels like to them when they hear those words.
If you want to know how someone feels, ASK THEM. Be specific – and let them explain. Asking for a description of what they’re feeling helps people articulate their feelings, it doesn’t cause them to doubt them. Although focusing on pain can make it worse, analyzing sensation can help us understand sensation better and sometimes distance ourselves from it.
My son has found several successful treatments by carefully analyzing where pain is occurring, what it feels like, and what triggers it.
That’s particularly true if you’re good at explaining your feelings.
But some people aren’t.
For example, my father was really bad at articulating sensations caused by poor circulation, which made his issues hard to treat. When asked specifically to describe it, ‘pain’ wasn’t actually the right word for what he felt, even though that’s what he called it. It was more like an intolerable itching sensation. When he articulated that, it allowed his doctor to learn more about what he was feeling and helped him better think about how to approach it. Asking for more information didn’t cast doubt on the reality of what he felt. It asked him to explain something that only he knew. It put him in the position of expert.
This is one of the most important points I want to make.
Many people in pain work hard to hide it. As my son always says – “I’m not faking being sick, I’m faking being well.”
People working hard to function and working hard to hide their pain can still be in pain. That’s why it’s called an ‘invisible illness’.
If you don’t let them tap out or rest or if you deny they’re in pain because they don’t ‘look like it’, what are you telling them?
I won’t believe you unless you look the part.
Show me your pain. Moan.
Stay in bed.
Then I’ll know you’re really sick.
The less you trust their voice, the more they are forced to spell it out for you – to talk louder. By not believing what they say, you’re teaching them to act hurt to be believed.
Attachment theory is one of foundational theories that helps us understand individual differences in how people react to the world.
Virtually everyone becomes attached. But we don’t all become attached the same way. People with different attachment styles approach the world differently.
Attachment is what keeps babies close to one or more others – usually close to parents, then siblings and other important adults – who make them feel safe. Interestingly, when the people those the babies go to respond consistently by being there, protecting them, and responding to their needs, infants become more independent.
Yes, you read the right. The more consistently babies get support, the more independent they become.
Attachment theory posits that being around others who provide a ‘safe haven’ – a safe place to retreat to when we’re scared – allows us to explore more and take more risks. We build a view of a world as safe and where we can count on the people we love.
What does attachment have to do with pain? Although I have done a number of studies on adolescent attachment, I have never seen a study looking at the relationship between attachment and responses to pain.
What I have read is that people who are securely attached – who believe they can count on others and are comfortable being close – are better able to ask for the help they need, better able to cope with negative emotions, and better able to work through their fear and keep on going.
Those all seem like important attributes for coping with chronic pain to me.
Bottom line: Believe.
Believing others when they tell you they are in pain tells them they can count on you, helps them feel safe (which reduces pain), supports your relationship, and helps them keep going because they know they can count on you to help when they need it.
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