Invisible Scars

Posted on: November 11th, 2013 by

How many invisible scars do I have? Let me count the ways.

During November, the #BCSM community is focusing on the invisible scars resulting from breast cancer. The latest #BCSM tweetchat transcript is here, and comments were flying.


We, members of the club no one wanted to join, have much to say about invisible scars.

Long after I got up from that chemo recliner and long after my radiated breast turned its normal flesh color, and long after my bilateral mastectomy, and long after my lockdown at ICU, I am still grappling with cancer-fallout scars. Scars that people who think I’m a victorious survivor don’t know about.

This post is a rude awakening.

I am living with Post Traumatic Stress Disorder. This is the first time I’m admitting this to the world at large, but I have PTSD from having had breast cancer and all the scares that come with it. I’ve experienced flashbacks, sleepless nights, triggers, and panic attacks. This is why I can’t handle tons of medical information. Luckily, I’ve had excellent treatment to help me cope with this trauma. I know I am not alone; so many cancer-affected people have PTSD (More on this condition and breast cancer in a future post).

I fear recurrence. Like so many breast cancer survivors with no evidence of disease (NED), I am afraid my cancer will return. I know too much. I know that cancer can recur many years after initial diagnosis and treatment. Maybe there’s a stray cancer cell, just lurking – ready to strike. I could go from NED to Stage IV in a nanosecond.

I fear leaving my daughter motherless – twice. Even though I don’t have metastatic breast cancer at this point, I still fear dying prematurely from a recurrence and leaving my daughter motherless. As my regular readers know, I adopted my daughter from China. For a variety of complex reasons, her biological mother left Ari motherless for the first 13 months of her life. Her birth began with loss. If I have a recurrence and die, I would be the second mother to leave her. I’ve taken elaborate measures to ensure that, should I die, she is well cared for physically, but I’m not sure how she would fare emotionally.

Going to doctors is still a huge hurdle. Doctor’s appointments are emotional agony. Seeing my oncologist caused me tremendous stress, even though he is a wonderful doctor. I’m ashamed to admit this, but I let two referrals to specialists expire because I couldn’t bring myself to make the appointments. They are top-notch doctors, but I just couldn’t bear to be tampered with. I lied to my primary care physician, telling her I lost the referrals. New ones are coming in the mail, and I will definitely be making the appointments and following through by actually going to see the physicians.

I wonder if the chemotherapy regime I received will cause more damage to me in the future. I have chemobrain that never went away, and my bone density has suffered as a result of chemo. I’m nervous about potential risk of future cancers.

I still struggle with body image. Objectively speaking, my reconstructive surgeons did an excellent job. However, my reaction doesn’t quite jibe with the outcome. Perhaps I should embrace my “new” breasts, but I feel a sense of loss and grief and anguish because the ones I was born with have been amputated. I regret not taking pictures of them before the surgery, but at the time I hated my breasts, knowing they were timebombs, and needed to remove them. I am gradually learning acceptance.

My oil painting "Diagnosis." It first appeared in my Lost in Translation post.

My oil painting “Diagnosis.” It first appeared in my Lost in Translation post.

These are just a few of the major invisible scars that I must live with regularly. Despite these hurdles, I still manage to enjoy life. I keep up with hobbies I love and relish my time with Ari and wonderful friends. I take nothing for granted.

Like everyone, my time on Earth is limited. I want the world to be a better place for having had me in it.

Do you have invisible scars from any kind of illness? If so, please feel free to share them here.

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4 Responses to Invisible Scars

  1. Nancy's Point had this to say about that:

    Hi Beth,
    Thanks for sharing with us about some of those invisible scars you have. I have more than a few myself. It’s not easy to admit that they still linger, so I applaud you for doing so. And speaking about these scars doesn’t mean we are ungrateful or not enjoying life. Speaking about these things is part of healing and self-care in my book. Again, thanks for your honesty, my friend.

    • Beth L. Gainer had this to say about that:

      Thank you, Nancy, for your honesty in all that you write. Those invisible scars simply don’t go away that easily. I think your point is such a valid one: it doesn’t mean we are ungrateful because we complain, but it is good to discuss the things that bother us. I agree that this is healing.

  2. Elizabeth J. had this to say about that:

    I think sometimes the invisible scars are the hardest, because nobody else seems to really understand them.
    I am more grateful for life than before, more open to the beauty of nature and music, but so much more aware of how fragile this life truly is. And I am tired of hearing that my awareness of that fragility is wrong, that I am supposed to be all “rah, rah, I’m victorious.” I would much rather “celebrate” through good music (anything from Southern Gospel to Bach), a good book, roses and sunsets, my grandson’s smiles and giggles, than a race with pink shirts. (Besides, between arthritis and neuropathy in my feet, a race is not my idea of fun anyway.)
    Perhaps those who do not see our invisible scars, those who do not want to hear of them, would be well advised to heed Shakespeare, “He jests at scars that never felt a wound.”

    • Beth L. Gainer had this to say about that:

      Elizabeth, I love Shakespeare! Thank you for sharing such an appropriate quote. I agree that often people don’t seem to understand these “invisible” scars. Like you, I am more grateful and revel in life’s joys.

      I’m glad you find comfort in music. By the way, I love Bach. The things that comfort you are better than a race any day of the week. Thank you for your comment.

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