The fact that the 1step2life app grew completely out of our experience is a family is so deeply ingrained into the fibre of me being that I forget to tell people about it.
Hence this post. I was asked for information about 1step2life by the editors of MyChronicBrain – an online magazine and newsletter for people living with migraine. So I wrote up part of our story.
I want to share some of what I wrote here.
What is 1step2life all about?
1step2life is an app developed for people who live with pain that makes it hard to do everyday tasks – get out of bed, spend time with friend and family, work, or go to school. I developed the 1step2life app based on my work as a developmental psychologist, my family’s experience living with severe chronic migraine disease, and in consultation with the clinicians at the Cleveland Clinic Pediatric Pain Rehabilitation Program.
Unlike most apps for people living with migraine disease or other pain disorders, 1step2life doesn’t focus on tracking symptoms (although you can log pain). Instead, the goal of the app is for people to set concrete short-term goals they think will improve their lives.
It helps people track small daily steps towards a richer, happier life – daily mood, self-care (e.g., showering, brushing your hair), caring for pets and others, daily chores, social activities like texting friends, hobbies, exercising, taking meds and following diets, and going to work or school.
It also has a mode for parents of children or teens living with serious conditions that helps them to break out of a relationship cycle that focuses on pain and illness and be more effective coaches and parents.
Why me? Some background . . . .
I am a developmental psychologist who has studied parent-adolescent relationships all over the world. I am particularly interested in adolescents’ motivations and why adolescents do what their parents ask and when they hide information or lie. You can see some of my work here. I am a Professor at Oberlin College and Editor in Chief of the Journal of Adolescence.
Until my youngest son was 14, he was completely healthy. Literally, he hadn’t missed a day of school. One May, he came down with what seemed like an odd stomach bug that lasted a few weeks. Suddenly he was constantly nauseous and throwing up multiple times a day. Doctors found nothing, even with invasive tests. Almost exactly a year later, he had his first migraine attack. Within three months he was chronic – despite being prescribed both preventive and rescue meds. By June his attacks would last from 4-6 days every week, he was so light and sound sensitive he couldn’t leave his darkened room, and he was in so much pain he could barely speak for much of the time.
If you know people with severe migraine disease, I’m sure you’ve heard this story before.
We were fortunate in that he almost immediately got excellent care at the Cleveland Clinic from a doctor who seriously and systematically worked through treatment options. He was referred to a pain specialist who worked on his coping mechanisms, helpful lifestyle changes, and taught him biofeedback. That was invaluable, as no medications touched his pain until the new CGRP inhibitors came out four years later. He was also fortunate to work with the CC Pediatric Pain Rehab program to help him regain some of the physical strength and skills he had lost by being unable to leave his room from pain. Before we finally isolated some of the issues underlying his disease, his attacks were lasting a month or more and even infusions were unable to help. Migraine just ate the four years of high school.
Developing 1step2life: Developmental and rehabilitative science
As you might imagine, I did what all parents do – dive into the literature, read everything I could find, and join support groups. Several issues really struck me.
All recommendations were to maximize functioning and adopt challenging lifestyle changes. Basically, the message was: do these incredibly difficult things like stop eating food you like, balance rest with functioning, keep functioning, don’t withdraw now so that – maybe – six months or a year from now you might feel better.
I study adolescents. That’s now how it works. In fact, we know that’s not how it works for anyone.
The patient mode of 1step2life grew out these insights:
- All people, but adolescents in particular, are much more motivated by gaining pleasure (rewards) than by avoiding pain (punishment)
- Definite short term rewards are much more motivating than possible long term rewards.
- Attending to and cataloging pain tends to make it worse. Distraction and emotionally neutralizing pain makes it easier to deal with.
1step2life is very simple – it lets you log and celebrate (reward) doing things that others take for granted but are hard for people living with migraine and similar diseases. I made it to the couch. I took a shower. I played with my dog.
Checking off those boxes focuses your attention on what you CAN do, not what you can’t. It also reminds you of other things you might want to do. For example, you check off that you took your meds, but it reminds you might want to say hi to your friend or eat with the family.
It also allows you to set short term goals (something easy, something that’s a stretch, something fun), and log your mood, and (if you choose) your pain. By visualizing the relationship between functioning, mood, and pain, you can see long term change that can be lost in the episodic nature of migraine and other headache disease.
The Caregiver mode of 1step2life is very personal to me.
In Caregiver mode, parents can log their child’s mood and functioning. This is particularly important because I know, as a parent, that it was incredibly easy to only see what my son couldn’t do. And the long-term effect this might have on his life. By focusing on his accomplishments, it helped me to encourage his autonomy and focus on his strength.
1step2life also encourages positive coaching by having parents log some of the parenting activities that can be lost when you focus so much on caregiving. Things like giving compliments, talking about your day, asking about fun things, encouraging autonomy.
In other words, it helps parents focus on something other than pills, pain, the missing homework.
So here we are . . . .
We launched 1step2life in November. My husband, Andrew Burns, has written essays here on neuroscience and on being a dad. My son, Sean, has written about biofeedback and living with migraine.
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Start where you are. Set your own goals. Take back your life. A tool for tracking goals, emotions, and success, not just logging pain. And the only app that has a mode specifically for parents, partners, and other carers that supports effective coaching and strong relationships.