"Just a Headache?" You've Never Had a Migraine

Minimizing invisible handicaps increases pain and stigma

Posted Sep 09, 2016

September is Pain Awareness Month.  

According to the American Academy of Pain Medicine, almost 100 MILLION people in the US suffer from chronic pain.  That's almost four times as many people as suffer from diabetes.  That's 164% of the number of people who suffer from diabetes, coronary heart disease, stroke, and cancer combined.  

It is estimated to cost over $565 BILLION a year.  It is a primary driver of the opioid addiction problem causing so much suffering right now.  Similarly, the opioid addiction problem is causing incredibly pain - real physical pain - in chronic pain suffers, as they cannot get the help they need because they are suspected of being addicts.

Why do we hear so much more about cancer and heart disease and disease then?  Because pain is invisible.  It's hard to see.  It's hard to measure.  It is stigmatized and minimized by people - some of them well meaning - who just don't 'get it'.

How does this happen?  By subtle bias slip into our language when we talk about illnesses like headache or migraine or pain.  Let me give you an example.

Stigmatizing Invisible Illness

Last week, a large news organization did a fantastic piece on how important school nurses are providing health care to children.  But listen to what they did.  

In the piece, they had a truly adorable kindergartner in the nurse's office.  She'd been sent there with her best friend by a teacher because she wasn't participating in gym.  The child says her 'head is on fire'. Her stomach hurts. She's exhausted.  She has fevers. These issues are chronic and keep coming up.

All of these are classic symptoms of migraines and other headache disorders.  But that's not important. The piece asks whether she has a mental health or other 'serious' issue.  Because (implicitly), chronic pain from headaches is not a serious issue.  Or, and this is even more in the context of the piece, headaches and nausea are seen as problematic if they are signs of a psychological problem rather than problems unto themselves.

Not just one incident  

Last time I complained to this program was also in the context of a really excellent piece on the cost of health care and how it can drive people into bankruptcy.  

In this piece, they interviewed a women who was in extreme pain for six months. She was unable to work and unable to function at home.  She'd been through months of expensive testing. But the interviewer said that money spent on it was wasted because it was 'only' a migraine.

That's what bias looks like.  PAIN is a disease process.  It is a serious issue unto itself.  It is not made less serious if it is caused by 'just a headache' than if it is caused by something you can see, like a broken leg or cancer.  

In fact, it's worse, because you can see those things and we know more about them than we know about neurogenic pain like migraines or regional pain syndrome or neuralgia, or New Daily Persistent Headache.

What Migraines Look Like

Five years ago I knew very little about migraines. I thought they were just bad headaches that come and go in an hour or three.  We all have headache like that sometimes.  

But I was just wrong.  Using the word 'migraine' to describe a short headache that could have many different causes leads to misunderstanding.  Just as joking about having OCD or being depressed leads to serious misunderstanding of how these clinical conditions affect people who have serious problems with mental illness.

Migraines are one of the most serious and common neurological problems in the country. The World Health Organization says more work hours are lost to migraine than any other neurological disorder and it's in the top 10 for loss of disease caused productivity in the world.

Lots of people say they have a 'migraine' when they have a bad headache that lasts a few hours. They don't know what severe chronic migraine really is.

Let me tell you about one child's migraines: Recently he had the equivalent of an ice cream headache 24/7 for 40 days before it was broken with a 3 day IV infusion in the hospital. His migraines make him so photophobic he flinches from light above dim and can't look at a cell phone screen or computer. He is so sound phobic he cringes when our cat walks across the room. It also causes frequent vomiting from pain or from what are called 'abdominal migraines'

Do you have any idea how hard that makes it to go to school? This is not 'just a headache'. This is what chronic migraine looks like.

I spent 3 weeks watching children in pain rehab at the Cleveland Clinic this summer. Half the kids there have headaches or migraines. They're fighting to get their lives back.  Some of them had attended less than 5 days of school the previous year.  That's 'just a headache'.

Another type of 'just a headache' is called a hemiplegic migraine. One girl whose mom I talk to is 16. When a migraine strikes her, it looks like she's having a stroke. One leg and arm collapse and she can tumble to the floor. Last year she had a hemiplegic migraine in the shower, fell, hit her head on the bathroom vanity and got a concussion.  She lost part of the vision in one eye.  Her mother found her when her service dog found her and kept dropping her phone on her face until she woke up and called.  

Why does she have a service dog?  When she has a migraine, she sometimes looses the ability to speak.  Can you imagine how vulnerable this makes a teen girl?

Many kids start migraines at puberty, but others start in toddlerhood. There are many moms in the support group I am part of whose children are in kindergarten. 

If You Think It's "Just A Headache" You're Part of the Problem

One of the major issues our kids have is people minimize their struggles by saying it's 'just a headache'. 

Or they say these invisible symptoms - photophobia, sonophobia, extreme pain, nausea, vertigo - are psychological in origin. Stress can trigger migraine.  But this is a neurological condition that is exacerbated by stress.  It is not psychological in origin.

This is National Pain Awareness Month. Migraine is the most common causes of chronic severe pain in children.  Don't say it doesn't matter because it's 'just a headache' and not something serious.

If you've been doing that, please stop. You're part of the problem.


Two excellent books on parenting children in chronic pain:

Conquering Your Child's Chronic Pain by Zeltzner and Schlank is an excellent introduction to how pain works and techniques for coping with it.  I hate that title, but it has helped me tremendously.  My son has also read it and found it very useful.

Managing Your Child's Chronic Pain by Palermo and Law is another excellent book.  It is more of a workshop approach and is aimed at parents who don't have access to a pain clinic. They include a lot of 'how to' techniques on relaxation.  They have deep breathing exercises here. 
A collection of my posts on parenting a child with chronic pain and helping them to return to functioning:  This includes all the essays below plus others on helping kids return to school, keeping kids organized, general parenting, and the frustration of dealing with people who just don't get it.

Nancy Darling
Source: Nancy Darling

Nancy Darling
Source: Nancy Darling
PARENTING A CHILD IN CHRONIC PAIN: ESSAYS FROM THE INSIDE: Raising a child with chronic migraines Kindle Edition

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