Being well means something different for each of us, for our family, and for our society and at different times.
I lost my hair to alopecia a few years ago. I used to have long, thick, silky, brown hair, with a few greying streaks. I was devastated when it all fell out, but there was little I could do.
I chose not to wear a wig. I hate having things on my head. For me, it also felt false, a fake version of myself. And yet, I hated being seen without hair.
Thinking back over the last four years, I see now that I withdrew inward and stopped going out.
Fewer people would see me if I didn’t go out. My alopecia reflected a disconnection—a splitting off and fragmentation. Seemingly small changes in our physical wellbeing can apparently have large effects on our functionality and behaviour.
Luckily, some ease developed when I was teaching groups of therapists, so I could continue my work. But in big groups or in general public environments, I still felt anxious and overexposed. I felt different and separated from others.
I recall running a large event soon after I lost my hair. My business partner at the time questioned using a promotional photo of me without hair, suggesting it portrayed a picture of sickness which wouldn’t be good for the brand image of our wellbeing conference. I was enraged.
But this experience also helped to confirm my inner belief that I should hide away. I wasn’t good enough, or well enough, to be seen.
I have noticed that people often stare at me when I am out—supermarkets, parks, meetings, garages. I tend not to go to restaurants, bars, or large events. I feel too exposed if I do. My social life has become very limited.
Over the last four years, I have really noticed what it feels like to look different. In this way, this experience has also been a great opportunity to learn. I have had to dig very deep to connect with something unseen in myself.
I have been learning, and still am, what it feels like to connect to the source of my being, something bigger than my ego-self. Who is Jane, and is it good enough for her to be okay just as she is?
About six months ago, I was invited to present to a group of Northern Irish business executives. Just before I arrived at the meeting, an old picture of me flashed up on my Facebook page. It had been taken 10 years ago, showing my long, healthy, abundant hair. In that moment, I realised just how much my no-hair made me feel anxious and fearful. I still truly hated not having hair. It was still gnawing at the core of my being, telling me to hide away and separating me from others.
What does it mean to be well? On that occasion, for me, it meant feeling well-enough to stand up and present to a business forum with no hair. I felt vulnerable and nervous. But when I shared my story, the warmth reflected back to me from the room told me that it is okay to be vulnerable.
Sharing our stories with others can be an empowering act of connection. It can bring forth the stories and experiences of others, forming bonds and community. These wise words from Rabia of Basra (c717-801) offer hope, “I was born when all I once feared—I could love.“