13 February 2015

Ichthyosis awareness: everyone’s an expert - Tara’s story. "I don't think anyone has any idea unless you live it."

As mentioned last week, it seems that when you are a writer or have a rare condition/different appearance, everyone’s an expert - strangers force their opinions and ‘remedies’ onto you. I’ve been chatting online to a wonderful Canadian woman called Tara for the past three years or so - her son Myles has Lamellar Ichthyosis. Last year, Tara wrote about the intrusion she faces, asking an online support group about what she should do. She's given me permission to republish conversations about what happened and how she responded, and of course, permission to share some photos. I really wanted to share Tara's experience, because as she's written, "I don't think anyone has any idea unless you live it."

When I tell people about some of the things said to me about my skin, I either get horrified reactions or ones trying to see the good in the situation, like saying "they just meant well" or "you should be prepared for the questions" or "you should just educate them". But they have NO idea of the intrusion faced. I really hate it when people project their beliefs onto us. People need to accept Ichthyosis is genetic - not the work of god or the devil or past life or any other higher power.

Sadly, the intrusion and ‘expert’ opinions dished out isn’t limited to me. So many others are on the receiving end. And I imagine it must be so hurtful for parents, as often it’s a subtle comment on their parenting skills. Another friend told me that when she was a young mum to her daughter with Ichthyosis, rumours circulated in her family that she had used drugs during pregnancy, and she sometimes encountered people yelling at her about burning her baby. People need to mind their own business. 

So back to Tara. I love how she sees the world, how she sees through the bullshit, and won’t accept this sort of intrusive behaviour towards her or her son. 

Last year, Tara, her husband and son went out with some friends on a pirate ship adventure. She posted some fun photos on her Facebook, tagging her friend in the photos. And then a friend of her friend decided to write to Tara with some ‘expert’ advice. Absolutely shocking advice, really.

Here’s her story. 

"Ok are you ready for this one???? I posted some pics of us from the Pirate Ship adventure and tagged a friend of mine as his Mom was in some of my pics - this is what a "friend" of his felt compelled to Private Message me. I am still in shock and don't quite know how to reply. I must reply, I know, but aside from a few profanities and insults, I am at a loss as to what else to say. HELP!!!"

"Hello There, my name is Jody. We have a couple mutual friends in common so your son's picture popped up on my feed and well it was so exciting to see. I know this may sound crazy and if it is too much you can erase this and move on…….but your son was a reptile in his last life. Funny how those things show up in this lifetime but it does. 
The reason I know this is because my stepson was a lizard in his last life and it was showing up in this life. Creams, doctor visits, exclusion, uncomfortable in his own skin he was finally willing to allow me to perform the healing modality that I am certified in called Matrix Energetics. Our session lasted about 5 minutes and in that time I had a vision of a lizard on the beach which meant nothing to me but then I could feel that the lizard was my step son. So I told him that he was and we laughed a lot which was a great release in itself and then I told him he could let it go now in this life. I explained that it is part of his DNA and it will always be apart of him…..often reptiles don't want to give up their armour because it was their protection at one time. That was the end of the session. 
The next morning after years of pain and suffering his skin was clear, soft and comfortable……and it is to this day. I bet your son loves bedtimes stories so maybe you could tell it like a story about a boy who no loner needed his armour….something like that. 
This is only a suggestions and by no means am I saying that there is anything about your beautiful child that needs to change at all. I have just been very guided lately to share info for the fun and playfulness of a happy life. Jody"
After some input from the Ichthyosis community, Tara gave a kick arse response:

"Hi Jody, 

Well you are right about ONE thing. You do sound Crazy and not just Crazy, rather BAT-SHIT crazy. 

While I appreciate that some people believe in reincarnation, I take complete offence to the fact that you have taken time out of your day to tell me that my one and only son was a reptile in his past life. 

You are insensitive and obviously a healer of NOTHING. If you were a "healer" you would know that it is wrong for you to give unsolicited advice to anyone. You are not fun, nor playful and I am certainly not feeling "happy" right now either. Rather your comments, beliefs and approach has left me feeling quite the opposite. 

My son was born with a rare genetic skin disease called Lamellar Ichthyosis and if you care to educate your self and stop being a lunatic for one moment, you should really read this.  

After much thought and consulting my Ichthyosis family (for a good laugh and to share how utterly off your rocker you are) I decided to reply to you in hopes that if you EVER see a child or person with Ichthyosis that you will stop your ignorant self from ever saying such a horrible thing to any one again. I will not be continuing this conversation and have exercised my right to Block you from further contact. Oh and I do hope that in your next life you come back as a kinder gentler human being, because you blew it in this life. Blessings and prayers. Cuz you're going to need it."

Tara then thanked the Ichthyosis community for their help:

"Thanks peeps and I really appreciate all your comments. It helped me breathe a little and not fly off the handle (which I would have done in a past life- ha ha ha). It was my gut reaction and there is something to be said for letting your emotions quell before you open your mouth. Something Dear Jody obviously has never thought to do. I want to sincerely thank you all from the bottom of my heart. I did not share this story with any of my non-Ichthyosis family as I just don't want people to pity us. I hate pity. But now I am tempted to, just to show them the absolute extreme of what we put up with from the ignoramus of the world and maybe, just maybe open their eyes to what we have to endure daily. Not for pity but perhaps to make them think. I don't think anyone has any idea unless you live it. blessings and hugs to you all."

And she told me this:

"I am aware that the world is not filled with geniuses but I did believe that it was filled with people that were a little more compassionate because people sure do pretend to be. In the past 7 years, I have heard a lot of strange theories, diagnosis, advice and downright intrusive behaviour that would never be mistaken for compassion. People for the most part are stupid and this woman certainly proves that without a doubt.

Now that may be a little harsh, but I hate that people say "oh well their just curious" bla bla bla - well I am curious about how the whole transgender thing works to, but you don't see me walking up to a transgender or sending them PM's asking about it. There are some things that are just no others business.

I think what bothered me the most about her post is that it wasn't a gut reaction from seeing Myles in person as in she spoke before she thought. Rather she wrote out a whole message to me, had time to reread it, think "hmmmm maybe I shouldn't do this, or perhaps this is just not my business".....but nope - she read it and thought "Oh perfect, this is great, I am going to send this complete stranger this message and I am going to feel good about it." that's where the ignorance and just plain stupid comes it. As you can see, I am not forgiving toward stupid. If she was an inbreed, I would understand, but based on her photos and credentials she seemed highly schooled. therefore no excuse.

I don't want to offend anyone, but I am a little tired of being offended."

If you'd like to learn more about Ichthyosis including my story and and stories from other people affected by Ichthyosis, click here.


  1. gobsmacked. As you probably know I have plenty of family members with mental illness so I feel I can gently suggest that the facebook 'friend' is an absolute fruit loop. One of the things that annoys me most about this kind of stuff is the lack of understanding that their advice and opinions are incredibly intrusive. A zillion years ago when I was studying at uni one of my besties in my course was visually impaired. We'd take the tram together with her guide dog and people constantly felt it was ok to comment and try strike up conversations with her (interrupting our conversations about course work or whatever). So rude! I got a message the other day from someone suggesting angioedema could be cured by a paleo diet, I swear it's like a cult!

  2. Wow! Now that is ridiculous!
    I was approached the other day at wet n wild and a woman told me I needed to get my son to hospital ASAP as he had third degree burns as her sister " looked just like that " and she was sunburnt. We were having the most amazing time and after that comment my son wanted to go home.
    I am sick of people's curiosity, diagnosis, advice and general comments. It is plain rude!

  3. I had an extremely close relative tell me I must have been a horrible person in a past life to have ended up with ichthyosis.

    I have yet to find a way to politley tell people, "You're being rude, intrusive and extremely immature and I have absolutely no reason at all to waist my time explaining something that's none of your business." without offending them. Hats off to Tara as I need to stop trying to not offend the rude people. I know it's not my job to educate the world. If I choose to do so one person at a time, great, but I want it to be my choice and not something forced on me every time I set foot out my front door.

    Thank you, Carly, and thank you, Tara.


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