06 May 2014

Ichthyosis Awareness Month: Darin's story. "Those with ichthyosis understand that they are visibly and tactilely different."

Darin writes a lot about touch - something I'm so interested in. When she sent me her story, I immediately empathised - I have thought about and written a lot about touch and skin hunger. This is such a beautiful, relatable piece of writing.

Darin has Lamellar Ichthyosis.

Meet Darin.

"Touch. Psychologists say it's the first language we learn from the womb. We can communicate anger, fear, love, happiness, just from the way we position ourselves against another. For those with ichthyosis, touch can divulge so much more, making us connoisseurs of human behaviour and our physical interactions truly revealing experiences.

A stranger once held my hand with an overly-firm grasp, his face grimacing while he turned our hands from left to right. Possibly looking for evidence or a means of understanding, or perhaps he was fine-tuning his primitive social skills. Nothing is more disarming in a job interview than scrutinising your candidate's hand before the interview process actually begins.

Letting Go

You reach out your hand, a person grabs it. His or her eyes open wider. "Something's not right here," the glance says. Some will shake longer to compensate for their initial, sudden reaction. The nescient will immediately seize their hand in an effort to wipe off any infectious disease they may have caught from this brief encounter.

Those with ichthyosis understand that they are visibly and tactilely different. We're acclimated to a stranger's stare, a rapid handshake overcompensating for what a person really wants to do -- let go. Perhaps releasing the hand releases the mind from fear. If we could communicate a wealth of intelligence about ichthyosis, ourselves, our personalities in a single handshake, how many people would hold on?

Holding On

In a fast-paced, technology-driven world, majority of people are affection deprived. You could conceivably go days, even weeks without touching or being touched. Often ostracised by uninformed or fearful people, I believe those with physical disorders value and crave touch so much more. A brush of the shoulder, a tap on the back: anything to remind us that we too are normal despite our differences.

The first time he held my hand, he didn't jerk it back in disgust. He didn't ask me what was wrong, why I felt dry, skin-cracked, and greasy. He was genuinely happy making this first intimate connection. Fingers laced, palms kissing. We walked back and forth across campus for hours without letting go.

I dated before, experiencing all the natural forms of affection. But this touch, this heartfelt sensation, was different. Without a word, he understood my desire for understanding. I didn't have to explain anything. There was no fear, no inquisition, no repulsion in his touch. Just his fingers grazing the base of my wrist, slowly inching their way past the palm and finally interlocking his fingers with mine. He recognises that ichthyosis doesn't define me, but is one very small piece in a highly convoluted puzzle, a puzzle he is resolute to solve. That single touch was comfort, security, love, and above all, normalcy.

He has touched my heart, and I never want to let him go."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.



  1. Physical contact & Ichthyosis has indeed had an enormous impact all of my life & this can be from others seeing my hands are dry, to shaking my hands, handing me change or kisses hello or goodbye to hugs and of course intimacy. Non of these events are without forethought & too many times I've shed away from the awkwardness surrounding these or apologised for other people's awkwardness & I for myself.

  2. Hi Carly, interesting similarities here with my life as a person with a vision impairment, touching the world all around me. I feel so fortunate to have to hold hands, ask for tactile communication with family and even strangers lend a guiding arm - my blindness brings kindness! I could not imagine my life without being in touch - thanks for bringing our awareness to Ichthyosis month.

  3. This made me think about my sister who has and has always had, severe eczema...and people would shun holding her hand. A short statured person I know also was embarassed to hold people's hands because of the way this person felt about what they described as their "chubby little fingers" and was worried about people's reactions to them. I know that I am always nervous about booking haircuts and massages from new and different places because I am scared that they might feel confronted by having to touch my "different" body. I don't know why this is. Hmmm...a blog post perhaps?!


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