Invisible Illness Week: The Hidden Scars of Breast Cancer

Patient Expert

Invisible Illness Week aims to encourage those with an “invisible” chronic illness to raise their voices and be heard. While many consider breast cancer a “one and done” illness, those who’ve battled it know that the lasting effects go on forever – completely invisible to everyone but the survivor herself.

Today’s the start of Invisible Illness Awareness Week, an annual campaign to raise public awareness about chronic illnesses that lack outward physical signs.

Millions of people worldwide live with a challenging health condition, one that’s often unapparent. Upon being informed, the classic response from an unaware friend or colleague is, “But you don’t look sick…”

You don’t look sick. So what’s wrong with you?

And that’s the challenge, right there in a nutshell: You don’t look sick. You go about your daily routine – work, family responsibilities, community participation – in a perfectly normal fashion.

Except you may be wracked with fatigue – by 11 a.m. Or your mind is fixed on unrelenting pain, rather than the task at hand. That’s invisible illness; and it’s a challenge, not just physically but emotionally.

Unlike many types of invisible illnesses, breast cancer can be very visible – especially during its treatment phase. You pass an older woman on the street; she’s wearing a scarf, no tendrils of hair sneaking out around the edges. Her face looks pale, and you suddenly notice her eyebrows are gone. Feeling a surge of sympathy you think, “Oh, she’s doing chemo. Bet she has breast cancer.”

Breast cancer can also be physically visible within the family circle. The missing breast is manifested as asymmetry in a T-shirt (or as a slashing scar in the bedroom). The severely swelled right arm, evidence of lymphedema. But what you don't see underneath is nearly as alarming, and can be just as damaging.

Breast cancer’s invisible damage

As survivors, we’re clever about hiding these physical signs: donning a hat, wearing a prosthesis, wrapping an arm in elastic. But the most challenging part of cancer is something that doesn’t need to be hidden. It’s already buried, deep inside the breast cancer survivor’s soul: fear. Terror that the cancer will return; that you’ll leave your children motherless, or put your parents through the agony of your death.

Fear is eviscerating. It can fill you like a poisonous smog, leaving behind a monotonous gray inner landscape: no joy, no hope, no serenity.

It’s also exhausting, as anyone who’s been through a scary experience can attest. You know how beat up you felt when your errant teenager finally arrived home six hours late from a road trip? How you dropped onto the couch like a stone after spending half a day in the ER with your 8-year-old? Fear isn’t just emotional, it’s physical.

Your body heals. Your emotions take more time.

Cancer’s scars fade. Your hair grows back, the lymphedema recedes, you rediscover at least part of your former health and energy.

The fear of cancer returning eventually dissipates, too. You reach your five-year “cancer-versary,” then pass the 10-year mark. Your yearly mammogram, angst-producing though it is, stays negative. Little by little, you regain your assumption of good health.

Yet deep inside, just waiting for the tiniest opening – an unexplained headache; a new lump – the fear remains.

And that’s the “invisible illness” we breast cancer survivors fight for the rest of our lives.

See more helpful articles:

Breast Cancer Fears: What Are You Afraid Of?

Breast Cancer: Relieving Stress, One Step at a Time

Fear: Strictly Optional

Fear of Recurrence: Where Do You Stand?

Breast cancer survivor and award-winning author PJ Hamel, a long-time contributor to the HealthCentral community, counsels women with breast cancer through the volunteer program at her local hospital. She founded and manages a large and active online survivor support network.