I am tired of the fight.
I’m tired of being regarded as an oncall helpline, expected to educate people all the time.
I’m tired of feeling alone.
I’m tired of being seen as difficult because I speak out about the abuse that happens to people with Ichthyosis.
I’m tired of the very organisation who is supposed to advocate for people with ichthyosis not doing more to advocate against discrimination, and supporting bullies (and me being expected to be quiet about this).
I’m tired of the expectation of having the educate and be nice when discrimination and staring and rude comments happen, so we don’t put people off from interacting with us in the future.
I’m tired of being made to feel I’m not doing enough – like with that journalist with ichthyosis guilting me for saying no to an interview the other day.
I’m tired of being unfriended and blocked by parents when I reach out to offer advice about media and oversharing – even when I’ve lodged complaints about how their kids are misrepresented in the media.
I am tired of poor media representation of ichthyosis.
I’m tired of seeing photos and videos of babies and children with Ichthyosis at their most vulnerable – in pain and in the bath.
I am tired of “ichthyosis moms” seeking fame through going viral. I hope their children never read the nasty things said about them by social media commenters.
I am tired of children with ichthyosis not having the choice to tell their stories on their own terms (if they want to at all), all in the name of awareness raising.
I’m tired of people with Ichthyosis being asked to leave planes, nail salons, restaurants, taxis and stores.
I’m tired that we have to prove we are fit to travel and not contagious, expected to carry documentation like we are illegal citizens.
I am tired of being tagged in every story on social media about cannabis oil being a miracle “cure”for ichthyosis.
I’m tired that we do all the heavy lifting – that we endure discrimination on top of discrimination when we speak out about the discrimination we endure. What a tedious cycle.
We keep raising awareness but things don’t improve.
Love and solidarity to everyone who is feeling tired too.
I wrote a book on life with ichthyosis. Details over here.