People may not understand how invisible illnesses disrupt our everyday lives – precisely because they're hidden. Tinne, the Belgian graphic designer who created our Hidden Stories characters, talks about her personal journey with her family, relationships and balancing work with anxiety and fibromyalgia.
My life has been taking big turns in the last three years. Halfway through 2015, after a five-year invisible struggle, I left my marriage (of 15 years) with an amazing, caring husband – with whom I have three teens – and came out as gay. Half a year later I moved on my own and we started to co-parent.
For two years I was engaged in a (Belgium-Sweden) long-distance relationship, which was a totally new and beautiful journey and a way to connect to my true self. But, due to its nature, it also came with a lot of heartache from both sides. In this period I started cognitive behavioural therapy, which made me aware of the 'high functioning anxiety' I've endured since a young adult. I was also diagnosed with fibromyalgic pains.
Outwardly people know me as cheerful and sociable, but there is this other side which up till now I have carefully kept hidden. These invisible struggles (identity, mood swings, anxiousness, panic attacks, chronic pain) sometimes take over control and then I tend to withdraw and not show up. Not to isolate myself in these days is a tricky challenge. People might take this as impulsiveness, disinterest or unpredictability. Feeling judged sometimes and the urge to excuse myself easily comes with feelings of shame.
Thanks to professional therapy, medicine, daily exercises, meditation (#Headspace), the support of my family and some close friends – and careful steps to more self-compassion – I'm able to live my life well (enough) as a single mom and as a self-employed freelancer, which gives me great joy despite the stress peaks.
Working for Root Experience on the Hidden Stories project is so great and is an opportunity to feed the bond between my everyday life and work. After a first concept sketch, Root Experience founder Simon Magnus briefed me about the spirit and way of working of Root Experience and the aim of the Hidden Stories project. Parallel deadlines and my anxiety almost made me cancel the whole thing, but I softened up by being assured I could 'take the time needed' (within the deadline of three weeks, haha!).
Based on the pictures and portraits of two participants, I started with rough sketches and in the next stage they were fine-tuned as digital drawings. I imagined a whole line-up of storytellers; and for fun I also gave myself a 'hidden place' on the back cover. Now the campaign is going I decided to 'come-out' once more. ;-)
Drawing Robbie's and Kelly's stories and designing the cover for the illustrated Hidden Stories book is so rewarding. Because of our shared experiences I feel a close connection to this project, even over long distance (though I was recently trained in this part).
Root Experience's Facebook support group has given me a way to connect with others in similar circumstances, and to feel the shared humanity – as a soft blanket that can keep you warm in times when things get tough. Showing yourself vulnerable feels rather risky but it's the ultimate step to wholehearted living, I believe. Finding your 'tribe' and related gratitude reinforces a feeling of joy, a state that is often under attack when feeling chronic pain or emotional instability. It's so easy to get hard on yourself. It's not a self-complain-affair but a powerful way to creep out of isolation through self-compassion, action, creativity, sharing and opening up.
Do you have a Hidden Story you'd like to share with us?
We'd like to know how your invisible condition has affected your day-to-day life, and hear of the kind gestures or dismissals you've experienced along the way. Or can you offer a perspective as a friend, family member or carer? Or as someone who now feels differently after learning about another person's experience with an invisible illness?
The stories we collect will form part of our Hidden Stories project, which is about exploring – as a community – the way we behave towards people with conditions and illnesses which can't be seen. Only by sharing our experiences can we begin to understand them.
Get in touch with Jessica (jessica@rootexperience.org) and we'll help you to (sensitively) share your story and find support if you need it.
Join our support group on Facebook
We've started an online Hidden Stories community for those living with or affected by invisible conditions and disabilities. As a closed Facebook group, it’s a safe place for sharing stories, asking questions, and for mutual support and solidarity – amongst people who really know how you feel day to day.