One unexpected aspect of falling ill is, to sum it up in a word: awkwardness.

People often feel awkward when broaching the subject of illness and cancer in particular. What can I do? What do I say? How should I say it? Should I say anything?

From my end, I can tell you that it’s awkward for the patient too. How do I deal with friends who are clearly at a loss for what to say? How do I respond to the question, ‘Is there anything I can do’? When people ask me ‘How are you,’ do they really want to know how I am, or do they just want to hear that I’m ‘Doing ok’? How do I talk about radical changes in appearance (if at all), such as baldness?

The list goes on.

I’ve struggled with this awkwardness–these questions–since the very beginning of my diagnosis. With much reflection and input from friends and family, I’ve come up with a few tips and suggestions. 

 Secrets of Cancerhood #1: Say the Unsaid

What’s in a name? When you’re talking about the name of a medical diagnosis, it can mean everything.

Don’t be afraid to call your condition by its name. It will be daunting at first, but you will find that it gets easier each time you say it.  Conquering the vocabulary of your disease is not just a semantic exercise.  It’s a vital first step towards shedding your denial and looking your new reality in the eyes.

At first, I was incapable of pronouncing the term pituitary macro adenoma without choking on my words. I didn’t want to recognise it.  It was too big and scary. And as long as I avoided it, I noticed that everyone else followed suit. The disease became the proverbial elephant in the room, growing more and more menacing with each conversation.

Talking openly about what you’re going through is contagious (in the healthiest sense). Illness has a mirroring effect that can be counterintuitive: it’s often the caregivers who take direction from the patient. You set the tone. As you open up about your condition, you indicate to your friends and family that it’s OK to talk about what is happening to you—both the good and the bad.

In my experience, some of my visitors seemed so intent upon not upsetting me that they avoided the topic of cancer altogether. I can’t blame them, but by eschewing the reason I was there in the first place, they left me feeling more uncomfortable and less reassured than before. I made it clear to them that there is no perfect thing to say, but that you have to say something. No one can “feel your pain,” but if you don’t talk about it, you are setting yourself up to feel isolated and misunderstood.

Openness has the effect of moving the disease from the subtext to the foreground, stripping it of its power to silently infect and distort the conversation. Once it’s out there, you might be surprised to find that the conversation will move fluidly from heavier topics to lighter ones.