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 to our facebook group for bald women. 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> at the end.

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.

I feel like 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, 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.

We crave human connection.

Those of us with hair loss know there is nothing like jumping on a zoom call with a bunch of humans who look like us to finally feel like we belong.

But that connection needs to be authentic, real, considered and respectful.

It’s not just words.

So the phrasing was wrong?

I’m going to break down the phrasing of this particular question and offer some alternatives.

“So what type of cancer do you have?”

This is an assumption phrased as a question.

It puts the hair loss experiencer in the position of telling the questioner that they are wrong. This is creating confrontation from the word go, something many avoid. It pushes buttons because of this.

Options you might have considered:

“Do you have Alopecia?” ← open ended and shows you have some knowledge of hair loss but it may backfire quickly if they actually are experiencing cancer.

“Do you have Cancer?” ← see above, it may re-trautmatize if they have cancer, or even if they don’t.

“How is treatment going?” ← See above.

Often people are also trying to be even more “delicate” and ask:

“Are you feeling better?”

This is probably my least favorite question as it sends my thoughts spiraling — Do I know them? Are they asking about treatment? Am I near a hospital? Do they know I had a cold last week? Maybe they’re getting treatment and is that something I need to take into consideration?

Is there any good way to ask?

Short answer no, but if you really have a genuine reason to ask, I recommend feeling out the situation first. For example:

“May I ask you a personal question?” ← This is open ended. They may assume you will ask about their hair loss, or not. But they are then in control of if they are open to questions today or not. Walk away if they say no.

“May I ask you something personal about your hair?” ← A little more specific, but again they can say no and you should walk away if they do.

Depending on their answer, you can proceed to ask something like

“My daughter’s school friend has alopecia and she’s devastated, do you have alopecia?”

“My best friend was recently diagnosed with cancer and starts chemo on Monday, is this something you’ve gone through?”

“I’m wearing a wig today, but I love your look without hair!”

Do you see the theme?! Lead with why you’re asking and share something personal first. You create a safe space by showing you have empathy and compassion. The valid reason for your curiosity creates a connection.

You’re not just asking because you noticed we looked different.

It’s not hard.

It’s just words.

This also all comes back to my main mission.

People are different. We are all different in our own ways and regardless of how different we are or feel — there is no normal.

So aren’t we all “normal”?

<TLDR — ie. Too Long Don’t Read>

For some it can be easy to respond with a simple, no it’s alopecia and move on. For some it’s not. For some of us we’ve been having questions like this since we were children — so there is a concern of being legitimately triggered from the question (I know for me that can happen when I’m asked this).

Similarly it could be triggering as previously mentioned if someone has, has had or has lost someone they love to cancer. All sorts of fears, grief, sadness can be triggered by this question.

Society is bad at talking about cancer as well, but that is a conversation for another day.

I don’t believe anyone with alopecia has an issue with anyone who has cancer or is experiencing hair loss due to that reason, it’s more that outside of some very specific scenarios — the question is just completely inappropriate — regardless of if your hair loss is cancer related or not.

For a long time I would put aside my own feelings on receiving this question, do my best to allay their embarrassment (and my own) and invest time in answering their questions and educating.

Sometimes I still do.

But it’s completely valid to be frustrated by this. They’re not just words anymore than “it’s just hair” is just words.

I’ve been answering this question my entire life and I think it’s perfectly okay to be frustrated that in the last 30 years, there isn’t greater awareness of alopecia and other forms of hair loss other than cancer. That it’s still not a subject many people know about.

For those with hair loss (from any cause) my suggestion is to educate, take the question in your stride or respond only when you want to, and when it feels good to do so.

Otherwise, it’s no one’s business and you don’t owe anyone anything.

I want to acknowledge that in some situations, these questions can lead to really beautiful connections with others with hair loss, or individuals that can relate to your experiences.

So if you absolutely need to proceed with a question, my suggestion is to lead with why you want to know.

If you feel comfortable putting someone in the position to answer a question about their body or their appearance, then put yourself out there first. Lead with why you’re asking — and leave open ended.

For example:

“My daughter’s school friend has alopecia and she’s devastated, do you have alopecia?”

“My best friend was recently diagnosed with cancer and starts chemo on Monday. Is this something you’re going through?”

Giving some context to the question in a gentle and compassionate way could change the way the interaction goes.

I still recommend if they decline to answer, you leave it at that.

If you wanna hear more of my anecdotes about living as a bald women for 30 years you can follow them here or find them on my blog.

Cover Photo by Brett Sayles from Pexels