But You Don’t Look Sick

​Cancer doesn't necessarily appear in places that are visible to the eye. Hair may grow back before strength returns. Scars may disappear, but fatigue can still remain. Someone can walk into a room and appear exactly as they usually do while, in fact, putting in more effort than anyone else realizes. The difference between how you look and how you feel is one of the loneliest aspects of undergoing treatment, and almost no one prepares you for it.

"You look great" is one of the hardest things to hear when you don't feel great at all. Most people mean well when they say it. They're relieved to see you doing okay, glad to see you upright and smiling. Yet, when you're running on empty, hearing that you look fine can feel like your exhaustion has been erased, or worse, like it was never real to begin with. It's a strange kind of loneliness, being surrounded by people who love you and still feeling unseen.

On certain occasions it may come as a comment like, 'Since you've completed your treatment, are you better now?' On other days a family member might expect you to keep to the plans as you used to, since, from their point of view, nothing has changed. Although none of this is intended to hurt you, sometimes it does.

You are not obliged to provide your full medical history in order to explain your condition, and it's perfectly all right to keep your response brief. Saying "I'm managing, but I'm feeling low-energy today" is true and doesn't require you to start a lengthy discussion that you don't want to have. If that still doesn't meet someone's expectations, you might say something like, "treatment does more than what is visible on the surface."

It's natural to feel frustrated, and that's perfectly alright. On some occasions, this frustration might appear as a short temper when dealing with someone you love, or as guilt about canceling plans. Other times it may come as comparing your current self to the person you used to be before the diagnosis. None of these situations indicate that there's anything wrong with you; they just show that your body isn't matching up with your plans. The frustration doesn't need to be cured; it just needs a bit of space to exist.

At PCSRI, we've sat across from enough patients to know a chart doesn't tell the whole story. Good care means asking how you're actually doing instead of guessing from how you look, and trusting your answer the first time you give it.

Healing takes more than treatment. It takes people around you who believe what you tell them, even on the days nothing looks different from the outside. If that's you today, you're allowed to feel exactly how you feel, whether or not it shows.