It's Not Cancer



“What type of cancer do you have?”


This question was recently posed to a friend by her doctor’s assistant. While it might seem innocuous to some, her frustration was clear in her post in our group. In light of the nature of this question, there were a few different responses.


Some agreed it was rude. Some gave her quips to give next time. Some thought she should simply take the question and move on. Some made the point that the question was - in the end - just words.


But is that true? Is it just words?


This is a long one, so feel free to check out the <TLDR - ie. Too Long Don't Read>


Those of us who have been bullied, made fun of, questioned or accused know - words aren’t just words. Words can be weapons, they can share love and create memories. They can be life changing.


“I’ve been diagnosed with terminal cancer” for example - are six words that changed my life forever when my sister told me she was going to die.


“I got the job!!” - Life changing. This was my husband letting me know for the next unknown length of time we would be living in New York City


“You’re in the wrong bathroom” - My own personal experience in being mistaken for a boy, god knows how many times as a child.


These are words, a total of only fifteen, that have altered the course of my life.


So I disagree.



They are not just words.


There are only a few ways in which our human selves can easily communicate with each other. Of them, words make up the lion's share of those communication formats. Language is a shared understanding of a collection of symbols, making up words. We then use these to communicate, whether it's verbal, written, braille, lipreading or sign language.


And they feel limited. I know it’s the best we have, but am I the only one who wishes I could plug my partner into my brain somehow and show him exactly what I mean.


If a pictures is worth 1000 words, imagine if we could show people how we felt in pictures??


I’m off topic again.


They’re not just words.



Why does it annoy you that people assume you have cancer?


For many in the hair loss community, and some outside of it, you may have heard this complaint before.


It may seem insensitive to complain about or to be frustrated with people asking these types of questions. After all, those asking are likely concerned, or looking to connect.


In a few online groups for people with hair loss caused by a variety of different conditions, including cancer treatment, I've seen valid concern about these complaints.


So firstly I want to address that.


In these groups, we are all experiencing hair loss. It is an identity changing, life altering experience for many. Regardless of the cause.


As an alopecian, I don’t believe our experiences should be compared. They are all unique to each of us.


On behalf of this alopecian (and I'm sure many others) - I have nothing against those who have lost their hair due to treatment for cancer.


While there is stigma around both hair loss and cancer, I don't believe this stigma is the cause for any of the frustration.


Instead, I propose some other reasons this question can be a source of frustration within the alopecian community. I also hazard as guess it's a source of frustration regardless of the cause of your hair loss.



Legitimate Triggers


As a child learning to step outside my family circle, I was at the same time learning how I looked different to other kids.


Unwelcome and uncomfortable questions became my norm. Adult after adult looked at me with pity. They told me they were praying for me, asked if I had cancer or how the treatment was going.


It was embarrassing. Children are taught to respect their elders and I didn’t feel comfortable correcting an adult. This happened repeatedly, and most memorably in front of the whole school once.


It took me long into my teenage years to build up the guts to correct people, or learn to just let it slide when I couldn’t be bothered. It took me years to learn that I was in charge of those interactions and I could respond however I want - whether that’s taking the time to educate, or smiling and nodding a moving on.


To this day, someone asking if I have cancer can bring me right back to that point as a child.


The other trigger that comes to mind is someone either having or having had cancer themselves or having lost someone to cancer.


Having spoken to many who have experienced this loss, and who are or have been deep in grief - losing a loved one (in any way) can create an immediate and visceral fear of death. A fear of everyone around you dying.


For some that event may have been the first time they faced mortality as humans. Maybe their loved one died suddenly or after a longer than expected but still very short battle (as in my case with my sister). Maybe the battle was years of medical treatment, and an eventual loss or hopefully, a win.


You don’t know.


But asking someone if they have cancer has the risk of re-traumatizing them. It may take them right back to that hospital room, or funeral service, or childhood.


After studying the impact of trauma and how we as coaches can avoid hurting our clients, I'm confident that unceremoniously invading someone’s personal space (which is what you are doing when you ask an unwelcome personal question) has the risk of re-traumatizing them.


It’s not just words.



But isn’t it an opportunity to educate others?


Sure.


Once I had figured out that I could correct adults and that I was strong enough to face their embarrassment that they got it wrong, I started on the education route.


If someone said any form of “I assume you have cancer” I would immediately respond with:


“Nope, I have alopecia areata, it is an autoimmune condition where the immune system thinks the hair follicles are foreign bodies and attacks them. Damaging them and causing the hair to fall out.”

I had my rote response and I was ready to go. I still use it today if I want to be short, sweet, and educational with someone.


This is fairly common advice to those who are trying to figure out how to answer these questions.


However this doesn’t take into account the still inappropriate nature of most of the questions. Outside of a few specific scenarios, I still believe this question is inappropriate.


I am not your teaching moment. I am not a learning opportunity. This is my personal life.


This is my body.


I have been answering this question for 30 years.


If you haven’t learnt yet that there are people in this world that look different from you and that they have every right to live a life without your questions, enquiries or assumptions, then you will never learn and I can choose not to use my time or energy to teach you.


Because what we are really talking about is the emotional labor of someone who is already for the most part just doing their best to get through the day.


They are battling wigs, drawn on eyebrows, false eyelashes and who knows what else. They may have fought to just convince themselves to get out of the house for the day.


Maybe they have their child with them, or their partner, and they were feeling invincible, strong, sexy, beautiful until you had to come up and ask them a very personal question that is really none of your business.


In the specific example above, where a doctor’s assistant made an assumption (despite having the patient’s chart in front of them) and asked a presumptuous question, this was needless.


I believe my friend’s frustration was completely founded.


I hope I'm not speaking out of turn when I say this probably applies to those who actually have hair loss from medical treatment for cancer too.


I can’t remember if anyone ever asked my sister if she had cancer once she’d shaved her head. I know they asked me if she did, I’m fairly certain they’d asked her children and probably her husband.


People made assumptions, and in that situation they were right.


That did not make it okay.


It would have broken my sister’s heart if they had asked her out right. Even is she didn’t show it to their face because she was bold as brave and strong.


So again, if you see someone without hair or you think might be wearing a wig, regardless of that person’s reason, I urge you to seriously consider if it’s appropriate to ask them about it.


It’s probably not.


So regardless of if the assumption is right, you still shouldn’t ask.


It’s not just words.



But sometimes it’s okay right?


I’m going to say it louder for the people in the back.


Unless you are in some very specific situations - no.


I know there are some beautiful stories of connection when people do have these experiences.


A member of the insta alopecia community recently shared how she’d inspired someone. A woman going through chemo saw her at the pub and was inspired to take her wig off mid meal and wear her head bald. Just showing up and having a quick chat gave someone the confidence to do something new. That's beautiful.


Sometimes the question comes from another soul who is bald who and wants to know how you have the courage to rock the look.


Sometimes it’s a little girl who has lost her hair to chemo. Her, or her mum approaches because she is desperate to find for her daughter a role model that looks like her.


Sometimes it’s someone who’s recovering from cancer and wants someone to talk to about it.


Do you see a theme here?


It’s a complex situation.