“When one door of happiness closes, another opens. But often we look so long at the closed door that we don’t see the one which has been opened of us.” – Helen Keller
“Mattering” is a fundamental human need, say psychologists Ora and Isaac Prilleltensky in their recent FSHD Society webinar. They define mattering as the feeling that you are valued, and that you are adding value. “For those living with a disability, the social stigma and isolation”− which can erode one’s sense of mattering − “can be even more painful than the disability itself,” they note. “This is particularly important for adolescents and young adult who are especially sensitive to peer judgement. It’s very important to emphasize that your worth is not contingent on how you look or how your body functions.” That’s why meeting others in the FSHD community – for example through chapter meetings and conferences – can radically alter one’s perception.
“Rather than share a grand theory, I want to share my experiences as someone with FSHD,” says Ora. “One experience was around leaving my job about 9 years ago. I loved my work but it became all-consuming with not enough energy left for my family. For a while I was struggling to let go of my career. This wasn’t helpful. After a time, I started to look at how I could invest in other things. More time with Isaac, writing books, etc. That’s my unique journey. Each of us can find our own way of adding value and making our lives meaningful.”
In this talk, the Prilleltenskys present their ICOPPE framework, which looks at different domains of that enable us to matter. Although individuals may feel powerless to change external forces in the world, the Prilleltenskys maintain that people do have the power to alter their internal thoughts and behaviors to improve well-being. These drivers of change include:
Behavior. Set a goal, create positive habits. Happiness comes from your own actions. Whether it’s to learn a new skill…or start an FSHD Society chapter in your community.
Emotions. There are many ways to cultivate more positive emotions. Feelings of gratitude can make a big difference. It’s also important to manage negative emotions. If we resist them, that makes things worse. But we can learn to make space for them with self-compassion. If we can feel, we can heal.
Thoughts. Challenge your assumptions. Write a new story for yourself.
Interaction. Connect. Communicate. Practice listening, pursue productive conflict resolution. Healthy relationships are about reciprocity. Everyone’s needs must be considered.
People with disabilities have much to offer to society, Ora emphasizes. You can be a mentor, or start a support group or chapter. You can volunteer or participate in a clinical trial. If you are dependent on your life partner to help with daily tasks, don’t forget that you have the ability and the responsibility to contribute to his or her well-being as well. This is the essence of “sharegiving,” a term coined by Isaac Prilleltensky to remind us of our commitment to reciprocity.
External factors of course play a role in well-being, Isaac notes. The more that people experience justice, kindness, and fairness in the world, the more feel they feel valued. Fighting for social justice and the rights of people with disabilities is another way, on a larger scale, to promote mattering.