06 February 2015

Everyone's an expert. More unsolicited advice.

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:

 “Before you speak, think -Is it necessary? Is it true? Is it kind? Will it hurt anyone? Will it improve on the silence?” Sri Sathya Sai Baba

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.)


  1. Great article Carly, as always.
    I have been reading and enjoying your blog for years and always found your writing insightful and thoughtful. I did come from outside the disabled community, but my 2 year old has very recently been diagnosed with autism, and suddenly your words take on a whole new world of resonance.
    Since the diagnosis I am being bombarded with unsolicited advice, and it bothers me a LOT to have to be a target of this rubbish (diets that will "cure" autism). I know that these people mean well but it is a burden and an unwelcome distraction.
    Plus, I strongly feel that to "cure" my boy of autism would be to wish for a totally different son, I love him as he is, autism is indistinguishable from him.
    Writer David Mitchell wrote that when people sent him clippings of such unsolicited advice for his son, he put them on the compost. This, I simply mentally compost them when they come my way, but I can't keep on being nice and evasive.
    Thank you for listening to me ramble x

    1. I am sorry people del the need to give you advice about cures, You just want to focus on giving your son the best life possible, day to day.
      And good advice re mentally composting. Thank you also for reading my blog and saying it's helpful.

  2. All I know is when I suggest something to someone which I think will help them, it comes from a place of care, not a need to fix things - though of course I want to help fix whatever is wrong with my friends if I can at all, because who wants to see anyone they love suffering?
    That being said I don't go up to random strangers and talk about their disabilities like they have no idea what they're doing. It's not like they don't live with it every day of their lives. I get so much "helpful" advice about my weight.

    1. Thanks Ren. I think there is sometimes an assumption that because someone has a disability or is different that they're suffering.
      I had a date tell me he wishes there was a cure for how I looked because it would just be kinder on myself to change my appearance. And while good intentioned, this was quite insulting.

  3. I understand how frustrating it would be to be constantly sent information or comments about new treatments or whether you have looked into this or that to 'fix' your condition. I'm no expert on your condition, but I thought I was an expert in something particular. Then this week I was humbled about something I thought I knew, but I overlooked one detail that made me realize I was no expert at all.
    I've learned a lot about your condition through your blog and when I saw you at Problogger the first time I wanted to meet you and find out why your skin was the way it is. I think it's a natural human condition to be inquisitive and then want to fix or help other people and I don't believe they mean harm from it. I would always keep an open mind because even though I know you would already know the best treatments and you love yourself no matter what, we don't know everything.
    Well done on the post in Daily Life too. So good that it was shared so much. Your reach is far and wide Carly. Have a blessed weekend. xx

    1. Thank you so much Bec. I sometimes find myself thinking about offering advice to people (who might mention their skin conditions) but always stop myself because I know how awkward it can be.
      I'm so glad we got to meet at Problogger :)

  4. I don't think it comes from people having a problem with their own appearance. I think that is you projecting your thoughts about your appearance onto them. Sometimes people are just unthoughtful but they are not always 'projecting' and I think people use that way too often to try and make themselves feel better (as in they must have self esteem issues etc). This is often not the case

    1. Thanks Anonymous (of course you are!). When people tell me "I couldn't possibly look like you" or "I would kill myself if I looked like you" or "is there a cure for that, to make you look a little more attractive?" (all things that have been said to me), I think it says more about them and their insecurities than it does about me.

    2. And that's okay. I just disagree. Why would it be about there own insecurities. Why can it not be that that is just how they actually genuinely feel? And yes I am anonymous because I have none of those other accounts. Does that detract from my point?

    3. So let me get this straight - it's OK to assume that Carly's projecting her own deepest, darkest thoughts onto others, but it's not OK to consider the possibility that random annoying strangers are projecting theirs? *blink*

    4. I welcome all opinions Anon. There is an option to enter your name she leaving a comment too.
      I don't mind that you disagree, but I get tired of people saying that it's MY problem when I call out these things. And I know that what I've experienced isn't something others have experienced. But the more I tell my story, the more I hear others have been through this too.

    5. And you can't tell me you think it's ok for someone to blurt out that someone doesn't fit their ideal image, so they wish there was a cure? Would you say that to someone? (How can that not reflect on the person saying those things??!)

  5. My name is Louise if that helps you. As a context, I am commenting from a perspective of someone with a visible facial difference. If someone makes a comment to me about my difference in the context of unsolicited advice, I just let them know that I am not interested in 'cures'. Of course it would not be okay to say someone doesn't fit their ideal because that would not be socially acceptable to say but let's be honest here, it doesn't. And that's okay. People will all have different ideas of what the ideal image is (just as you do) and by virtue of this, we will not always fit in to each individual's ideal. I think the problem is with trying to change other's ideal images. This will just not happen. People find all different things to be attractive/offensive/unattractive etc just as you and I do. There is no use pretending that there will be people who think we do not fit into the ideal for some people and certainly no point blaming that person for feeling that way.

    1. Thanks Louise, glad to see your name.

      I definitely understand your point - though these things said to me were SAID - not thought.

      And like you, I do tell people thsres no cure or operation, that I am comfortable with my appearance and am generally always polite.

      You're most welcome to tell your opposing point of view in an appearance diversity piece on my blog. There's a contact form up there to get in touch.

  6. Ah yes, if I had a dollar for every time someone suggested 'Have you considered grommets?', I could retire. It's insulting, because it implies that we aren't trying hard enough, and that the team of knowledgeable and experienced doctors who help us manage her care are somehow letting us down. For the record, yes, she has had grommets. Five times. Followed by 19 subsequent surgeries to try and preserve her hearing and improve her quality of life. If only it were that simple!

  7. Oh me... I can understand anyone maybe glancing quickly as brains have been programmed to notice anything 'different' to themselves but I can't understand why they then take it upon themselves to open their mouths as that is connected also to a brain that should have the time to then delay the ridiculous words of advice. I have a small brown spot (think I have told you) birthmark and have been kindly informed that there are probably treatments 'now' to have removed or that concealers are much more advanced... Oh thanks because I completely forgot I had it there.... Anywho.. have you tried standing on your head (wearing only bright green woolen overalls and hot pink gumboots) and counting backward from one hundred whilst drinking freshly squeezed orange juice upside down? (this won't work but will make me laugh, so please video and send.) xx as always brilliant Carly.

  8. I'm hearing you Carly. I suffer from severe excema. One thousandth helppful person with good intentions - "Have you tried goats milk soap?" Me - "Yes I've tried goats milk soap, made it worse." One thousandth helpful person with good intentions - "Really? Are you sure it didn't work because it cured my sisters friends daughter excema?" Me - "Yes, I'm sure it didn't work, thankyou". :/

  9. I love that quote and have it up in my classroom. I agree with what your friend said about wanting to fix things. Also people are often ready to give their own opinion without being asked for it, without having all the facts and without really listening. I tell the children in my call that the word LISTEN also makes the word SILENT. I don't think some people really are able to try and see another's point of view or situation-they are very quick to judge and advise.xx

  10. Love this Carly. And love the advice to question whether what you are about to say will "improve on the silence". Actually I think I'm going to use that in my daily life, not just in terms of people who may be different to me (for whatever reason).

    1. Thank you - it's such a relevant question for everyone

  11. ohhhh yes, I hear you Carly. In my world it is comments like "Have you heard of Dr Mercola? It's probably leaky gut/ if you went paleo you'd be cured/ you should take these very expensive supplements/ you only need to be positive and your illness will go away/ this is all because of trauma/ are you SURE that's what's wrong with you?" ai ai ai. Enough already people. We get so many opinions/ suggestions/ assertions that all say the same thing at their heart: you mustn't want to improve if you won't listen to what I saw on the internet. It makes me angry, frustrated and yes, insulted. These suggestions assume we don't do any research ourselves or care about our own wellbeing. It has been my biggest drive to navigate the best possible pathway through what is happening to my body. It's a hard slog and it would be nicer if people could stop thinking first that they have the answers and start listening to what we say. They might save themselves a lot of time and earnest energy. I know it often comes from a desire to help, but there are billions of other ways to do that. Just ask us how!

  12. Some people shouldn't be allowed on the internet - I do agree some people genuinely come from kindness and wanting to help. others just push their own agenda and know it all attitude, I'm sorry you have to deal with it whatever their intention.
    I've been given unsolicited advice re- cancer and I hear you .

  13. Wow you've really hit a nerve here... I can so relate! I have some health issues, mostly due to allergies - some visible at times (skin probs) some not visible but rather debilitating...I try not to talk about it mostly... I choose to heal myself with natural remedies and alternative ways - an boy oh boy do people feel they have some advice for you when that comes up! Very annoying! Thanks for sharing this... Love that before you speak poster. x

    1. Thank you for sharing your story!
      I love your user name too :)
      I think people think they are trying to be helpful but it just isn't.


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