Everyone's an expert. More unsolicited advice.

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Being an online writer attracts opinions from everyone. So does having a visibly different appearance and rare condition! As I get published more widely, I have come to realise that this occupation and this condition attract unsolicited advice and opinions and, ironically, give me a tougher skin. This unsolicited advice is just another form of intrusion.

My blog post about no more apologies was published on Daily Life a couple of weeks back. It did so well - with lots of amazing, supportive comments on Facebook, and thousands of shares. I even got recognised by a reader on the train.

I also got two pieces of unsolicited advice emailed to me via Facebook email, plus a comment telling me that I shouldn’t hug people.

An email:

"I Carly, I was moved by you story as I had severe eczema. Often looked like you and used gallons of creams. I'm sure you've had lots of medical advice and probably been prescribed loads of steroid creams. If that's the case, please google "topical steroid withdrawal”

I don’t use steroids.

Another email:

"I read your interesting newspaper article, and wanted to write you a brief note to say that there is another thing to stop apologising for. I am the parent of a young woman with a major disability as well as a medical practitioner, and the thing that struck me about your article is that you shouldn't have to apologise for expecting better medication that does not cause you a social embarrassment. Australia is an affluent country, and we expect good medical treatments. 

I am not familiar with the treatments for ichythosis, but if you combine the pharmaceutical industry with the cosmetics industry, you are talking of multi-billion dollar concerns. No woman buying cosmetics would accept a cream that leaves a residue on her clothes, friends and pillow case, and neither should a person requiring a prescription cream.

There is sometimes a problem with big pharma companies investing in treatments for uncommon conditions, as they may not make a lot of money on them, but if you combine their research with the cosmetic companies research on creams, I cannot believe that there is not a better way.

Wishing you all the best in your career.”

I worry that she’s a doctor and she’s giving out these opinions. When I replied, she did apologise, which I am thankful for. I told her that I am treated by the best dermatologists in the country and I am disappointed that she believes there has to be a better treatment for me, based on my picture and several hundred words that I have written.

While I believe her message came from a place of good intentions, it's sad that she equates care with the need to be fixed. I am quite comfortable with my appearance and my skin, and as I wrote in the article, it's attitudes to disability that need to change. My appearance is not a social embarrassment.

And the Facebook comment: 

"Don't apologise for your disability, but do apologise for your (optional) actions. If a person is in a wheelchair and they move too slowly on a thin corridor, that is something they cannot help (not optional), so they do not need to apologise. But hugging is optional! It isn't like your disability means you MUST hug/touch people who don't ask for it. Sorry but I'd really dislike getting cream on my clothes, is that so weird?

On the other hand, if you make things you have to touch oily, like the floor or appliances, then that's not your fault, because you are just going about your life.”

He needs a hug.

I’ve written a lot about how I feel about unsolicited advice before. Here, here, here and here.

And no matter how much comes my way, I still don’t appreciate it. I hate the remedies offered, especially when they’re supported by a lack of understanding about Ichthyosis. I get that it comes from a place of care and concern, but often it’s really insulting and not very helpful. 

I understand that I put my life out there for people to read about - but they must remember that they usually only know me through 500 or so words plus a couple of pictures, and I’ve lived with this condition ALL of my life, seeking different treatments and cures over the years. A simple message of “great article, I can recommend some treatments that might help you, let me know if you’re interested” would be far more appreciated.

A friend told me "I think many people confuse 'care' with our society's 'need to fix things'. Some things need management, not a fix. So there's guilt about not being able to fix something and they don't realise it's actually them not the person they have projected on.”

And I agree with her - often these solicitors project their own insecurities and issues onto us.

Just because you might have an issue with the medical system, your own condition or appearance, it doesn’t mean you need to shoot your views off to a patient (usually a stranger!) who is very experienced in living with their condition.

I've encountered this saying a lot:

I think these are excellent words to think about when encountering someone who looks different or has a rare medical condition that you think you’ll be able to help.

(This is part one of my ‘Everyone’s an expert’ mini series. The next post is from a friend whose son has Ichthyosis. Whenever I put these sorts of posts out there, I feel the need to show readers that it’s not just me feeling this way! Look out for it next week.)