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Living with a Disfigurement

Robin_for_webYour self-image is your mental picture of how you look. Your self-esteem and sense of identity factor into this self-image, and your face is one of the most important part of how you picture yourself and how others see you. But what happens when your face changes? Cancer treatment can result in dramatic changes to how you look, feel and even function. For many head and neck cancer patients whose faces change significantly during treatment, adjusting to their new appearance and/or impaired ability to eat or communicate is one of the most traumatic parts of their emotional journey.1 Callahan C. Facial disfigurement and sense of self in head and neck cancer. Soc Work Health Care. 2004;40(2):73-87.

Unlike other types of cancer, the scars from head and neck cancer often cannot be covered or hidden and are therefore visible to everyone. You may feel self-conscious and less confident than you used to, and you may wonder if your visible disfigurement will hold you back in your work or social life. You may even isolate yourself and slip into depression as you come to terms with your new face.2 Hagedoorn M, Molleman E. Facial disfigurement in patients with head and neck cancer: the role of social self-efficacy. Health Psychol. 2006 Sep;25(5):643-647. However, you can still lead a happy and productive life if you learn to accept change, take advantage of the many different kinds of help available and find ways to adapt.

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Physical, social and emotional adjustment

There are three categories of adjustment to a facial disfigurement from head and neck cancer surgery: physical, emotional and social. Depending on the location of your cancer and what was removed and/or repaired during surgery, physical adjustments may include difficulties chewing or swallowing, breathing, speaking, seeing or hearing. Issues with eating, drinking and swallowing affect your social adjustment because they may limit your ability to eat out or enjoy other social activities like you once did. Similarly, you may have to come up with new ways to communicate, which can be frustrating and tiring. Try not to isolate yourself because of your functional challenges and fears about how other people may react to them. Having an active social life can help prevent or relieve feelings of depression, anxiety and isolation from disfigurement.3 Baker CA. Factors associated with rehabilitation in head and neck cancer. Cancer Nurs. 1992 Dec;15(6):395-400.

Some people struggle more with changes in how they look than how their bodies function. Having to adjust to changes in both appearance and function can be even more difficult. Your face is where you express your feelings and personality the most.1 Callahan C. Facial disfigurement and sense of self in head and neck cancer. Soc Work Health Care. 2004;40(2):73-87. It is normal to feel self-conscious or even scared of social interactions because you are uncertain about how people will react to you. Know that how others perceive you is in some ways beyond your control, and you will need to develop coping strategies to help you interact more confidently and/or move on from negative encounters. You can influence people’s reactions to you to a certain degree, though. Research shows that those with facial disfigurements who approach new people with confidence and the belief that others will accept their appearance are more likely to be successful socially and emotionally than those who lack confidence or believe people will reject them. People react better in general to those who are confident and positive in their interaction with others.2 Hagedoorn M, Molleman E. Facial disfigurement in patients with head and neck cancer: the role of social self-efficacy. Health Psychol. 2006 Sep;25(5):643-647. This is true whether you have a facial disfigurement or not.

Learning how to appreciate yourself and others is the first step in learning how to live with a disfigurement. It isn’t so much learning how to see past it, as how to see through the changes to your body that cancer and cancer treatment may cause—and helping others to do the same. It’s not an easy process, but with time and effort, it’s possible.

I think you have to know what the new normal is for yourself. “Am I happy with what I look like now in comparison?” No. But it is my new normal. I did not choose it. It did not choose me. It is a hump you have to get over. Heather P. (orbital tumor survivor)

Learning to live with a disfigurement

This website contains several pages about specific aspects of living with a disfigurement that you might find helpful. They fall into the following categories:

Your Emotions

From the moment you are told that you need surgery that will disfigure your head or neck to adjusting to your life with a changed appearance, you will likely experience strong emotions. This section will help you to adjust your emotions and find support.

Handling People’s Reactions

You cannot control how other people react to you, but you can influence their reactions by being positive and confident. And you can control your own reactions to others. Learn coping strategies that can help you feel less bothered by negative reactions and move on from them more easily.

Resources

Use these websites and books to help you learn more about living with disfigurement.


References

1 Callahan C. Facial disfigurement and sense of self in head and neck cancer. Soc Work Health Care. 2004;40(2):73-87.

2 Hagedoorn M, Molleman E. Facial disfigurement in patients with head and neck cancer: the role of social self-efficacy. Health Psychol. 2006 Sep;25(5):643-647.

3 Baker CA. Factors associated with rehabilitation in head and neck cancer. Cancer Nurs. 1992 Dec;15(6):395-400.