Imagine this, you’re rushing to get to work for a big meeting as you pressed the snooze a couple of extra times and you’re waiting to collect your standard latte at your local cafe. As you turn around to leave a stranger jumps back and exclaims “what happened to your face”. You walk into the meeting shakily.
Or, you are doing your weekly grocery shop when a woman comes up to you and gives you a business card with the details of an MLM skin care product that she claims is curing people “with skin just like yours”. She is the second one this week, and you’ve lost count for this year.
Or, you’re visiting your local GP for a script as you have a standard head cold. Your regular doctor isn’t in today so you are seeing someone new as a one-off appointment. Before even asking what you’re in for today he abruptly states your skin condition, exclaiming, “I’ve never come across your skin condition during my clinical practice” and proceeds to ask multiple questions and your diagnosis and treatment. You have to tactfully segway the conversation into what you were attending for in the first place.
Or, you’re visiting your dermatologist for a recent infection. It’s a registrar day at the clinic. You prepare yourself by sitting on the treatment table. A flock of students enter the room and start reeling off medical terminology, describing every detail of how your skin condition is presenting, touching you, discussing among themselves and writing notes, without even saying hello or asking if you’re comfortable. You sit half-naked, feeling uncomfortable and vulnerable, too people-pleasing to decline.
You may have read through these scenarios and thought how absurd they are. You may think these kinds of things don’t happen in real life unless you’re a character in a tv show or an animal in the zoo.
Unfortunately, a scenario similar to these has occurred to Carly Findlay, a Melbourne based speaker, writer and appearance activist who has ichthyosis.
And, they are a likely common occurrence for many of those that live with visible skin differences or disabilities.
Are people consciously THAT rude? Have people forgotten the simple courtesies of doing unto others as you would do unto yourself?
I honestly don’t know. But it sucks.
When I heard Carly talk about similar scenarios such as the ones described above in her recent memoir, “Say Hello”, and during an interview for the Heal Thy Skin Podcast, I couldn’t shake the feeling of anger and utter disdain for people that would act in such an insensitive way.
Carly so eloquently explains it in her writing and also during our discussion that people are generally curious and have a sense of wanting to help, sometimes no matter if it is welcomed or not. Sometimes people are downright rude, but much of the time, they are just uneducated and assuming.
I can almost guarantee that the scenarios listed above could have been orchestrated by you in one form or another at one point in your life. I don’t say this to upset you but I would like to ask if you can muster up the courage to reflect and see if perhaps you could have been the perpetrator in one of these stories.
This is why I believe we need to change our language when it comes to skin conditions.
In my work as a Dermal Clinician, I’ve seen a lot of skin, in all of its glory, in many facets of disease and health.
On reflection, I can think of several times that I saw something on a patient’s skin that I hadn’t seen before to which I may have been overly eager to point out to them despite them visiting me for a completely different concern. I remember being a student and peering to look at a person presenting with a skin condition as the class gathered in a circle around the treatment table while the “patient” lying there in a daze, them never having so many people look at them before, much less while they are dressed only in a gown and their undergarments.
Those that do not have visible skin differences can act in ways that are dehumanizing, othering and discriminatory.
We wouldn’t accept it if someone was to track us down in a shopping center to give us a marketing brochure of an anxiety drug while we were doing our shopping.
Nor would we accept it if our doctor decided to bring up our IVF history if we were visiting for a common cold.
So here are 5 ways we can change our language about skin conditions:
(including spoken and internal dialogue)
1. Instead of describing someone as “suffering from x skin condition” say “living with x skin condition”. If someone has a life long skin condition that they manage every day, who are we to say they are “suffering”, they could be thriving despite their daily challenges.
2. Instead of asking someone “what happened to your skin” first ask yourself is the question relevant to the situation. If you are on public transport the relevancy of what skin condition they have is much less than the chit chat about noticing that they are reading the same book as you.
3. If in a clinic scenario, instead of medicalising their skin condition and speaking about them as though they weren’t there ask them (again only if relevant to the situation) how they are feeling, ask them to describe their concerns with you, ask what they would like to get out of the treatments – remember, not everyone is seeking a cure.
4. If you are in a work or social setting and someone has a visible skin condition instead of going out of your way to speak to them to ask about their skin condition instead say, “hello” and get to know them on a basis of who they are and how they came to be at the event, seminar, job role that you’re both at.
5. If you are tempted to approach a stranger and let them know about a product or treatment that cured your aunties best friend of their seemingly incurable skin condition. Stop and ask yourself if would you enjoy someone chasing you down to tell you about a weight loss supplement that is proven to help “people just like you”?
Bonus tip: If you have been in a situation where you were curious and politely asked someone about a visible difference and they declined to answer, don’t think that they are rude. It is likely they are in a rush, exhausted, overwhelmed or just feeling a little over the questions. It is not their responsibility to educate you, after all, would you describe your medical records with a stranger?
To learn more about visible disabilities visit Carly Findlay’s blog, she shares all kinds of guides and resources to keep you better informed. You can also purchase her book, a memoir called “Say Hello” from all leading bookstores and as an audiobook on Audible.