Advocating For Children With Migraine
Living with migraine comes with all sorts of daily challenges, from difficulty driving, to deciding whether or not to call out of work, a migraine existence can be uncomfortable and debilitating. Each day presents its own new challenges and getting through each hour can be a victory in and of itself.
Many of us in the community know well what it is like navigate the world with migraine as an adult and all of the hard considerations involved, but living with migraine as a child has unique challenges and adversities that, especially if not carefully considered and addressed, can have a stark impact on many areas of life well into adulthood.
Growing up with migraine
Many in the community know that I have lived with migraine since early childhood, and that from the time I was in daycare my ‘head pain’ was an issue that perplexed the adults in my life, including my doctors. From a very early age, I was diagnosed with both asthma and allergies, and doctors seemed to have a really good idea on what factors in my environment might have contributed to those conditions, as well as treatments to try.
When it came to the head pain, fatigue, and vomiting that I experienced near daily though, all of the adults in my life often came up blank. Even though my mom experienced migraines, I remember being confused about 'what was wrong with me' growing up. I was told maybe I had been bitten by spiders in my hair. I was told I was fibbing and mimicking the adults in my life. I was told children couldn’t get migraines.
Dealing with chronic migraine during college
It wasn’t until I was in college, after many years of dealing with more than 15 migraines a month, after many years of struggling academically because of chronic pain, after many years of vision problems, exercise aversion, and intensely trying to massage away the pain, and after years of taking far too much Excedrin and other pain medication daily, that a doctor first described me medically as having chronic migraines.
I know just how difficult it is to go through an entire life experiencing invisible pain without the language and affirmation to describe that pain, and this is why I think it is so important to understand what children might be going through if they are experiencing migraines early on. It is difficult enough to be an advocate for oneself as an adult, and often times we have to be the advocates for the children in our lives when they can not do it alone.
Listen intently and believe children
I am a big advocate of believing folks when they tell me they are experiencing pain, particularly children. It is the job of adults in my opinion to investigate and take care of the children in their lives because oftentimes children can’t advocate for themselves. Growing up, I would constantly feel sick and have throbbing head pain, and tell adults that I felt this way. I remember being fed tons of Motrin, and being pulled away from other kids at school and in daycare to go lay down in isolated dark rooms.
I also remember times when I was ill at school or even in nurses offices where I wasn’t believed, or made to suffer through the pain without any kind of support. I think that some of the adults just weren’t used to dealing with this kind of pain, and others were too busy to really dig in, but from my experiences of being a shy, quiet, and nervous kid in pain, it can make all the difference to really dig in, listen, advocate, and help children when they express their pain.
I have read a number of articles and studies on links between childhood trauma or stress and illnesses like migraine. Recently, I read a fascinating article on the relationship between Adverse Childhood Experience scores (often referred to as ACE) and childhood asthma, and I also learned about this Ted talk which delves into the relationship between childhood experiences of trauma and health risks.
While these studies and conversations around trauma and health don’t give us a definitive picture into whether or how much trauma directly influences experiences of migraine and other illnesses, and while it is extremely important to remember and acknowledge that the experiences of migraine are many and varied, I personally found these studies fascinating. My ACE score was very high, an 8 out of 10, and I suffered from both asthma and migraine from a very young age, along with other health issues including depression and anxiety, from childhood into adulthood. Even if the links between trauma or adverse environments and migraine aren’t definitive, it can still be really important to try and alleviate stressors and negative influences from children's lives when they are already dealing with difficult pain.
Talk to children with the respect they deserve
One of the worst habits I have seen adults struggle to break is forgetting to talk to children with dignity and respect. We are not the bosses or rulers of the children in our lives, and we should always remember that they are brilliant young people with big hearts and big ideas and deserve our respect just as much as any other adult. It is especially true in my opinion to validate and respect the perspectives and experiences of children whenever they open up to us, particularly about pain. So many of the instances of my childhood where I felt helpless were those incidents when a teacher, or a nurse, or a doctor disbelieved me or tried to discredit me because I was ‘a kid’.
Respect goes a long way in advocating for children, teaching children to advocate for themselves, and developing adults who can stand up for themselves with pride. It is also so important in my opinion for caretakers of children to know the language and research available to them to advocate for their kids in the doctor's office and at school. If a child is struggling in a classroom for instance, it may be because they are in pain --- a lot of times parents can do a lot more advocating in this situation than the child can. Many who live with migraine have parents or other elders who have also lived with the disease, and that shared experience can help to identify that a child may be experiencing migraine early on.
Remember, migraine is indiscriminate
One pertinent thing about migraine to always consider is that the disease doesn’t very well care who we are. Many in the community live in different places in the world, like different movies and music, and look completely different. Many folks in the community have widely varied lifestyles and upbringings. A child who doesn’t experience any trauma, or academic issues could be dealing with the silent illness just as much as another child who experiences both struggling in school and adverse environments. This is why it is so crucial again to listen to and believe kids when they tell us they are in pain.
Did you struggle with childhood migraines growing up? Are you a parent to a child with childhood onset migraines? What are some of the challenges you or your child have faced? Let’s discuss in the comments!
How much has your migraine disease changed or evolved over time?