Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects
Changes in Appearance
We emerge from a transplant changed. For some people, the changes can be seen; for others they are subtle and can be covered up, or they are invisible. Changes in appearance post transplant result from a combination of many factors. They can happen due to aging of the skin from radiation or the effects of GVHD, from hair loss or premature graying, or from organ damage. Also, certain medications can change how we look. Steroids may change how our body distributes fat, altering the shape of our face and waist. GVHD can cause changes in hair growth and skin tone. Even changes that are invisible to others, hidden under layers of clothing, can change how we feel about ourselves.
Living in a culture that values physical beauty makes it all the more difficult to cope with and accept these changes. How we look and the face we present to the world are closely linked to our identity. In some cases, changes in our appearance may make us feel ashamed, self-conscious, or anxious about our body and may challenge our sense of self-worth.
In the first few years after the transplant, I was ashamed of how I looked and was reluctant to forge new friendships. I just couldn’t imagine that someone would want to befriend me, given the fuzz of hair on my moon-shaped face, the dark circles under my eyes…I missed out on some potential friendships because of my own self-judgment. Now, even though I still don’t like the way I look, I just try to act the way I would if I looked as I did before the transplant.
My hair has not filled in and is still baby-fine. So I have three wigs, a short one, another that is one inch longer, and another that is two inches longer, so it looks like I get haircuts. I’ve gone from 180 to 160 to 245 to 180 again in weight. My hair has changed in color, texture, and volume. My face has made me unrecognizable to my own family. My skin has changed in many ways. It has impacted my life in every way imaginable and has messed with my self-esteem and identity in a profound way.
Every time I look in the mirror, I see someone different than the person I knew during my life before transplant. The new me has circles under her eyes, thinner hair, skin with an uneven tone, aged skin. I try to tell myself that these scars tell the story of my life. They are my badge of courage. But I still miss the old familiar look that was me.
My appearance has changed. I got better looking (just kidding!). I do look different, but this has had no effect on my life.
Changes in body image can cause great distress and can lead to feelings of shame, embarrassment, inferiority, or anger. These feelings can have a profound impact on quality of life and can restrict our activities in many ways including:
- Reluctance to leave the house
- Reluctance to date or meet new people
- Embarrassment to undress in front of others
- Shying away from intimate contact and sex
- Inability to accept the new self
Coping with a Changed Appearance
It is helpful to remember that our appearance is only the tip of the iceberg of who we are. Most people appreciate us not just for our looks but for our actions, compassion, humor, skills, integrity, vulnerabilities, and strengths. In the end, it is behavior much more than looks that determines how well a person will do in social situations.
Here are some ways of coping that others have found helpful. You can try one or more strategies at the same time:
- As much as possible, stop comparing what you look like today to what you looked like before. Find ways to embrace and value the things that you still like about your appearance. Look at yourself with compassion, maybe a little humor and, to whatever extent possible, let go of self-judgment.
- Reframe the situation. Change your perspective and find ways to see beauty or meaning in the imperfection. What may be an ugly scar can also be seen as a badge of courage, a testament to all that you have gone through. As one person stated in their tag line, “Scars are like tattoos, but with better stories.”
- Continue to do the things that promote health and well-being such as maintaining an active lifestyle, exercising, eating well, sleeping enough, doing things you enjoy. A healthy lifestyle may not restore your appearance to what it once was, but it will help you look and feel better.
- Consider going to a makeup specialist, a stylist, or to a program such as the American Cancer Society’s Look Good Feel Better program (www.lookgoodfeelbetter.org) to help you spruce up your appearance through makeup and changes in hair style or clothing.
- If you can’t learn to love your new look, try to stop caring about what others may think about your appearance. This may require changing what you value about yourself, grieving what you have lost, and pushing yourself to change your priorities.Keep in mind that beauty is in the eye of the beholder, and it is subjective. Your body image is what you believe about your body but does not necessarily reflect what others see. What you find unattractive may be attractive (or not noticeable) to someone else.
- Have a sense of humor. One survivor with blotchy, discolored skin noted, “Guess I won’t be modeling bathing suits anymore, unless it is the leopard-skin print.”
- Continue pursuing relationships, friendships, and activities that you love. Relationships succeed or fail all the time based on things completely unrelated to appearance. How you behave and treat others is much more likely to affect your relationships than how you look. Although there is a possibility that a relationship won’t develop because of your appearance, there is a guarantee that it will fail if you don’t put energy into pursuing and maintaining it.
- Find a safe setting to discuss your feelings and fears with trusted friends. Finding ways to communicate your feelings with others can open the door to rich and meaningful exchanges that may bring you closer. Or find a support group or therapist with whom you can discuss your feelings and ways of dealing with a changed appearance.
Imperfection – The Beauty of Cracked Pots
There is a wonderful parable about a water bearer who carries two large water pots, which he hangs on either end of a pole on his neck. One of the pots has a crack in it and every day leaks out half of its water onto one side of the path. The cracked pot is ashamed of its imperfection and apologizes to the water bearer for being imperfect and not accomplishing its task. The water bearer responds that there is nothing to be ashamed of and points out that only one side of the path has flowers. He tells the pot that it is thanks to the water leaking out of its crack that one side of the path has been watered daily, thus allowing the beautiful flowers to bloom. He tells the pot that he has always appreciated the crack because it has allowed him to bring beautiful flowers to the house.
Moral: We all have unique flaws – our cracks and breaking points. It is sometimes in these cracks and broken places that beauty resides. Recognizing that part of being human is being “flawed” in some way opens the door to greater acceptance of ourself and others. Accepting our broken places may help us have compassion for the perceived imperfections of others. It can help us to reach out and make connections. Sometimes our vulnerabilities can be a source of inspiration or strength. And, regardless of how we feel about our broken places, they are part of what makes us uniquely ourselves.
Back to Survivorship Guide Main page