First published in Psychology Today: Thinking About Kids October 2014
Let me tell you about my morning
I guess my morning started last night. Maybe it started a few months ago.
For the last several months, my middle schooler, like clockwork, gets a migraine on Sunday afternoon. It starts with him feeling a little odd and spacey. Then he would start getting flashing lights in front of his eyes. Sometimes the whole room he is looking at distorts, like one of those weird spatial anomalies in Star Trek.
Then the pain starts. Sharp stabbing pain through the top his head (ice pick headaches), the thudding at the base of his neck, and the pressure at both temples.
But the worse part are the sensitivities. Wincing from the unbearable noise of the cat walking across the room or the birds singing outside or the radio on three rooms away. And cringing from the light in the hallway. Did you know you can feel pain when someone just puts their hand 3” over the top of your skull? You can. It feels like deep, unrelenting pressure.
And the nausea. And vertigo.
Last spring, the migraine would start Sunday and leave Thursday or Friday. In June, there were three days when he didn’t have a migraine. After months of special diets and medications, we’re down to Sundays. Every Sunday starting between 2:30 and 4:00. And it’s actually been getting much better – usually ending by bedtime or by morning. We had been feeling a glimmer of hope.
So yesterday, we were really happy when he got all the way until 6:00 before it started. Unfortunately, this morning it was still there. The pain was a little less, but with full bore vomiting until there was nothing left and he had the dry heaves. Thankfully, no sensitivities.
After feeding him a breakfast he immediately lost, I packed him up, helped him get dressed, and pushed him out the door to school. It is the hardest thing I have ever had to do – as a parent or otherwise – packing him out the door when he’s so obviously in pain. But his neurologist and the pain specialist say it’s like physical therapy and will help retrain his brain. His brain needs to learn that light and sound and breezes on his face aren’t pain. And they’re right: school helps him. And my son knows they’re right. But he still doesn’t want to go. And I don’t blame him.
Children in School with Chronic Pain
In the last few months, I’ve met a lot of parents with kids who are in pain like this. Or much worse pain.
Through a friend, I met a woman whose 16 year old was hit on the head with softball and has been in unbearable pain – like the worst of my son’s migraines – for over four years. She just started college this fall.
I’ve looked at adorable pictures of a toddler running around with sound cancelling headphones because when she gets migraines, she cries uncontrollably from the normal sounds of a household. With the headphones on she can run around her bedroom.
I’ve listened to parents talking about bringing their kids in for 33 botox shots every 3 months to reduce chronic daily headaches from 20 days a month to only a few days a week. Others trying nerve decompression surgery to stop pain in pre-adolescents that has gone on for two or four or five years. Experimental surgery and medicines on top of the chiropractic sessions, massage, herbal remedies, diet changes, meditation, and exercise which all help some people.
Some of these kids have congenital problems. Some have suffered concussions or been in car crashes. All of them are in pain, many of them for years on end.
Reconciling Pain With School
Just like parents with children with cognitive or physical disabilities have things they just get tired of people saying, there are things that parents with children with headaches get tired of hearing.
- I’ve had a few migraines too. I can sympathize. (A two hour migraine – no matter how bad – doesn’t help you fully understand what it’s like to have that kind of pain day after day, week after week, sometimes for years at a time. It just doesn’t.)
- Can’t they just work through the pain? (No. If they could, they would)
- Are you sure they’re not faking it? (Yes.)
- Have you tried Excedrin Migraine/Alleve/Tylenol . . . ? (Yes. Do you know that many chronic headaches are caused by overuse of over-the-counter medications that are designed to be taken rarely, but not for ongoing pain?)
And my least favorite: Maybe you’re just putting too much pressure on them. A lot of kids get headaches from stress. Just what I need: to be told it’s all my fault. It’s bad enough I can’t fix it when all I want is to take the pain from him. It would be so much easier to carry it myself. Chronic headaches and migraines are not caused by stress. These types of headaches are caused by a neurological problem or problems. Stress can make them worse – just like stress makes it more likely you will become ill with a virus. But stress is not the cause. Experiencing headaches and pain is very stressful, however.
Catch-22: Faking Being Well
The kids also get in this Catch-22.
If they go to school in pain, they often get really good at hiding it. They laugh and joke. They walk around. They talk to friends. They don’t usually cry. They vomit secretly in the bathroom so that they won’t get sent home. They try to participate in extracurricular activities to distract themselves from pain. And the more normal they look, the more likely it is that people will see them acting normally and decide they’re just faking it.
Dealing With Chronic Illness Isn’t The Same As Dealing With a Short Term Illness
We are blessed with a school nurse who really does understand what serious, chronic migraines are like. We have an understanding school district and my son has very many patient, concerned teachers. But let me tell you one more reason why being chronically ill is different than being out with the flu for two weeks or having a broken leg or having mono.
It never goes away. Think of what that means for schoolwork, which also never goes away. It means when my son goes to school in pain, he works slowly and suffers from difficulties focusing. He is absent minded and disorganized, like people are after a concussion or a seizure. His brain isn’t working right. That’s why he has a migraine. So his school work doesn’t get done.
He comes home from a day at school in pain, with all his regular homework and all the extra work from school he didn’t complete.
He spends his weekends making up the work from the week before.
When his migraines really get going, he is always in pain or making up the work he couldn’t do when he was in pain. He never gets a day off. He never gets to relax. He never gets to just kick back and do nothing. Or when he does, he knows it’s going to cost him. Because there’s always more work he should be doing. And then he worries about that. Which makes him stressed. Which can, in fact, trigger migraines. Or he can’t sleep. Which can, in fact, trigger migraines.
With incredibly willpower he has not missed a day of school after the first week because of migraines. He’s gone to school in pain. He’s gone to school vomiting. He has gone to school when he was whimpering from the sound of the pigeons outside his bedroom window.
And when he got the flu, he missed two weeks of school. And now he has more work to make up.
There are tens of thousands of kids in this country who suffer from migraines. There are others with concussions that cause chronic pain. There are kids with congenital spine defects that stop the normal flow of spinal fluid and cause excruciating pain. There are kids with chiari malformation. There are lots of kids in pain for lots of different reasons. There are parents all over the world who are coping with this and children with many other forms of invisible, chronic diseases. They deserve admiration, support, and as creative solutions for their problems as we can find.
Children Who Go To School In Pain was first published by Nancy Darling for her blog, Thinking About Kids, for Psychology Today on Oct 20, 2014. Reading this now, I wish this was as bad as he ever got. Unfortunately, he got much worse before he got better.