A conversation with my son Matthew, age 8:
Me: What’s it like on the days that I don’t have migraine attacks?
Matthew: Great!
Me: And how about the days when I do?
Matthew: Boring. You lie in bed. We can’t annoy you and I want to play games with you.
Me: What would you do if you could do anything to Migraine?
Matthew: I’d zap it with an anti-migraine machine.
‘I love this’ (Matthew and me playing cards) v. ‘I hate this’ (Me in bed with a Migraine attack)
Disease Burden on Children
Disease Adjusted Life Years (DALY) is the sum of the years of life lost due to disability or early death. I coined the calculation “Disease Adjusted Mummy Years.”
My son Daniel, age 12, has lost 5 years of me, and Matthew has lost 3 years.
Not good, right?
I’ve bounced around the various stages of grief, guilt, denial and anger, but mostly, I’m at acceptance and hope.
Funding
When I saw this graph, it took me back to anger and grief.
Congress expects the National Institute of Health to consider disease burden when prioritizing funding, but that’s not the reality. For example, chronic liver disease has the same disease burden; however, it receives 10 times the research funding. Migraine receives less than 50 cents per person living with this disease.
My life and my kids’ lives are worth more than that. The way I see it: Every time the migraine community’s funding is overlooked, it’s a lost opportunity to reduce my kids’ DAMY score. My kids could have experienced fewer dull days of me cooped up in bed with an overworked dad trying to hold down the fort. There could have been more fun, more play, more freedom, more parenting.
Daniel says, “I don’t know if you realize, but when you are ill, Daddy has to take care of you, so we basically have no parents, and nobody pays attention to us.” I do realize! This is parenting with migraine.
Parenting with Migraine: Support & Stigma
Fortunately, most of the people in our community get it. They’ve seen how many events I’ve had to cancel and heard me talking about Migraine many times. We have a lot of kind and understanding friends who really help with things like rides for the kids. Still, sometimes the “it’s just a headache” stigma affects my kids too.
“When you went into the ER, you sent in a message to all my teachers because I had missed homework,” Daniel said. “Most of them respected it, but one of my teachers still got really angry at me.”
Passing through the ‘portal of happy’ at the end of an attack.
Parenting with Migraine: Emotional Effects
In some ways, the harder days are the predrome and postdrome days. Those days, I’m not quite sick enough to let go and go to bed, but I’m irritable, tired and depressed from pushing myself through pain. During those times, it’s challenging for my kids to discern that it’s Migraine making me impatient and that I still love them lots. Providing security and a calm, reliable home is a real challenge with a chronic illness. I worry about how to protect them from the anxiety that comes with Migraine — and yes, worrying about protecting them from worry, I know that is funny!
Me flying along happily, ‘Yay’ ‘Weeee!’ until I hit a migraine wall ‘Uhoh’
Silver linings
I am grateful for the empathy, compassion and flexibility that my kids have developed as a result of growing up with a parent with migraine.
I’ll give the final cynical word to Daniel with this piece of advice to other kids: “When your parent has a migraine, use their discomfort as leverage to get rewards!”
Written by:
Clare Simmons
Community Manager
Migraine Again
Written by:
Read More Posts
Migraine Action Plan: Begins with Access to Care
Are you satisfied with your migraine treatment plan? Do you have barriers to care? As…
How Implicit Bias and Medical Gaslighting Hurt BIPOC
Being a Black woman living with chronic daily migraine for more than 14 years has…
Migraine Care: Advocate for Access
This year, National Migraine and Headache Awareness Month’s theme is Advocate for Access. The National…