Carly F. - Melbourne, Australia - 2012
Never apologize for the way you look
I've apologized for the way I look and for my illness many, many times. This timid girl in me seems to forget everything my Mum ever told me (that I'm beautiful, that I don't have to answer to anyone, that I should be myself) and I try to confirm to what's expected.
Parents have shielded their children's faces when they've been frightened after catching a glimpse of me. "That lady's scary, Mummy", they say, nestling into their mother's body. I smile, sympathetically. Their mother smiles back, sympathetically. I am not sure what we are being sympathetic for. I shouldn't have to feel apologetic for scaring a child through my looks alone.
I apologize for asking for a seat on the train. I look around for a businessman or a person who looks younger than me (difficult when sometimes I also look 17) and in a small voice, ask "Excuse me, can I please have a seat?" They oblige, generally politely - there have been exceptions, I thank them, and say sorry. I say sorry for being so sore my legs are throbbing from the inside out, bloody stockings stuck to my skin. I say sorry for the thought of being more comfortable sitting down, my body not being jolted by the inertia of the train's jolts and sways. I say sorry for having to go to work, even though I am feeling the level of pain which indicates I shouldn't. I say sorry for asking them to give up their morning comfort before work so that I can be more comfortable.
I apologize for not being able to sit outside in the heat or the cold, or amongst smokers. I shouldn't have to. I am just looking after my health.
When I worked at the department store, a woman came up to me to tell me "It's so good someone like [me] is working and not locked up somewhere". Darn right it is. I felt like she was trying to make me feel guilty for interrupting her pleasant shopping experience.
I've been made to feel guilty about how much I can eat. Once a colleague made pig snort sounds because I was eating a spinach and ricotta pastry at 10 am, and she commented she was jealous that I am so slim considering how much I eat. I eat a lot because I have to eat a lot; because I need to replenish my energy. Because my skin renews at a rate so fast, I am 28 days ahead of you already.
When I am in the sun, people make me feel guilty for apparently trying to get more sunburnt than I look. "You should be wearing a hat", "How can you let yourself get so sunburnt?" they judge. And so sometimes, I avoid going out on incredibly hot days so I don't have to apologize for looking this way.
Lastly, and the hardest thing, is apologizing to boys. When doing internet dating, there's usually a conversation had before we meet, when we are getting along just dandy, that goes a bit like this:
"There's something I've got to tell you."
"I have a skin condition."
"Yeah,it'slikeeczemabutworseandI'vehaditallmylifeandIlooksunburntbutI'm stillnormalandstuff,anditwon'taffectyou." And I say that all in one big breath, trying to prove that I am just like every other girl.
And then they say they're ok with it. But I know they won't be when they see me. And so I ask "Are you sure you're ok with that?"
What person should have to ask someone else whether they're ok with how they look? Really?
I shouldn't have to apologize for how I look. I should be (and am) proud of what I do in life, for the friendships I have and for my talents.
The reality is, my red face will always enter the room and make people stare. But it's up to me to make them think differently about the way I look, and I can do this by showing them that I'm not going to feel guilty for who I am. And nor should you. Never apologize for the way you look.
Carly is an Australian woman with ichthyosiform erythroderma/Netherton syndrome.
She is an appearance activist, award winning writer and blogger, television presenter, fashionista, live music lover, aspiring chef, communication student and avid shopper. In July, she will be speaking at the Appearance Matters Conference at the Centre for Appearance Research in England. After that, she will be traveling to New York, to a writing conference.
Carly blogs regularly - Tune into Radio Carly
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.