YOUR STORY, YOU IN A NUTSHELL:
I am a mother of 2 children, I fell ill after the birth of my first. I had a lot of health problems: the diagnosis of lupus in 2003 and progressive scoliosis in 2009 with a major operation in 2010. The various difficulties related to these diseases gently pushed me towards entrepreneurship.
I created Handivisible after the difficulties I encountered on a daily basis as well as the exchanges I had with other people who were going through the same ordeals. Especially the passage in the queues. My health concerns prevent me from having a prolonged static standing position. I therefore took the steps to apply for MDPH recognition (Departmental House for Disabled Persons). I finally realized that it was not always easy to pull out this card that justifies that you have priority or to beg your place from the people in front and have to justify your disability.
A disability is not necessarily visible and we do not necessarily want to express it. Disabled is the desire to offer a solution that is suitable for different disabilities and can be positioned in all public places.
Entrepreneurship has helped me a lot to overcome my own difficulties. Every day I meet people with bigger problems than mine. In a way, it helps me put things into perspective.
Helping them, it also carries me, every day I get up for a very useful project, it gives meaning to everyday life.
WHAT HAS BEEN YOUR MEDICAL JOURNEY?
The diagnosis was not found right away, I had a period of medical wandering. Then several hospitalizations including the separation from my baby and the cessation of breastfeeding: it was heartbreaking.
Lupus is a dragging stone. The disease wears me out all the time. It prevents me from enjoying the simple moments of life: a family meal, playing with my children... joint & muscle pain, permanent chronic fatigue.
WHAT HAS BEEN YOUR BIGGEST CHALLENGE?
Caring for a baby during illness. The fatigue left no respite, between that of a young mother with short nights, illness and exhausting treatments.
WITH YOUR LOVED ONES HOW IS IT GOING?
I don't think my loved ones understand what I'm going through because my illness is invisible. My face does not betray me, I always give the impression of being well because I am naturally smiling.
It's hard to find a balance. I don't want to talk about my illness all the time, but sometimes I'm disappointed with certain reactions. Especially the "how are you" that necessarily expect a positive answer or do not necessarily expect an answer at all. I've even had "you look good" times when the person knew it was wrong.
I just wish I could express my pain simply, say no, it's not okay and have the right to be vulnerable.
WHAT IS YOUR RELATIONSHIP TO THE SUN?
I should run away from him, but he makes me feel so good. I love the warmth on my skin, it's comforting. But when it is too strong, I hide or cover myself. I have never done the lizard. On the other hand, I feel the periods when the lupus is stronger… I become scarlet or I have redness that appears as soon as I go out for a few minutes.
HOW DO YOU PROTECT YOURSELF?
I use SPF 50 face cream all year round and I wear hats/caps outside.I'm lucky I'm not too bothered because I'm careful
"After the rain, the good weather"
I seek out the little pleasures, I pay more attention to the little things that do you good.