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Handling People’s Reactions

Elderly Asian woman.Remember how hard it was for you the first time you heard you had cancer or saw your face in the mirror after surgery? Remember the powerful mix of negative emotions you felt? It may not be easy to accept, but the people in your life, even strangers, may have a similar experience at first. If you have a visible disfigurement, you can pretty much count on unwelcome attention, comments or questions from time to time. Even people who have very positive feelings toward you and nothing but goodwill in their hearts can inadvertently reveal shock or dismay when they first see your scars, or blurt out a comment or question that comes across as insensitive or hurtful to you. Try to be understanding and patient with them if you can. It can certainly be difficult, particularly when you’re not feeling well or you’re struggling with your own emotions. But if people are trying to have a conversation with you about your scars, it means they are interested in your story and are not rejecting you. You could consider that a positive.

Handling rude, insensitive or hurtful reactions

It is normal to feel irritated, angry or hurt when people stare at you, ask intrusive personal questions, express pity for you or reject you outright because you look different.1Lebel S, Castonguay M, Mackness G, Irish J, Bezjak A, Devins GM. The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho-Oncology. 2011 Sep 19. Even if they are polite, you may feel it’s simply none of their business. It is okay to be selective about whom you speak to about your disfigurement and your cancer experience. Simply tell curious people politely that you’d rather not talk about it and change the subject or signal your desire for quiet.

Expect that not everyone will react in an ideal or compassionate way. Ignorance can lead to fear and stigmatization, and some people are just plain mean.1Lebel S, Castonguay M, Mackness G, Irish J, Bezjak A, Devins GM. The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho-Oncology. 2011 Sep 19. The negative behavior of others will certainly cause you distress. Your impulse might be to hide from the public after a particularly painful incident with a rude stranger.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. Resist this urge. You need to be able to function in public settings for your own emotional health and well-being.3 Callahan C. Facial disfigurement and sense of self in head and neck cancer. Soc Work Health Care. 2004;40(2):73-87.

When you experience a very negative reaction from someone, decide if you want to engage with the person or walk away. Though you may not want to spend your time educating others about head and neck cancer and its treatments, know that equipping others with reliable information about your condition will help them to understand and will build their empathy and tolerance for you and others. This can be particularly true for children who may simply be too socially naive to know that pointing out your disfigurement or loudly expressing a negative opinion about it is rude and hurtful. So if you see value in engaging with people whose reactions upset you, by all means do so. It might make you feel better. If you do not wish to engage, or sense it will do no good, just walk away and let it go. Try not to dwell on your anger or hurt feelings if people stare at you or say hurtful things about your appearance. It is their problem, not yours. You are a proud survivor, and you should not waste your time or emotions on the ignorance of cruel strangers.

Helping others to react well

Even if you have a very severe facial disfigurement, most people will respond positively to you and adapt quickly to your appearance.1Lebel S, Castonguay M, Mackness G, Irish J, Bezjak A, Devins GM. The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho-Oncology. 2011 Sep 19. After their initial reaction, which may be one of surprise or brief discomfort as they try to decide where to look (people are sometimes unintentionally rude in their attempts to avoid being overtly rude), people will usually respond to your positive attitude and reflect it back to you.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. If you are fidgety, uncomfortable and anxious, they will likely feel the same way. If you are upbeat and self-confident, ignoring your disfigurement and their initial reaction to it, they will settle more quickly into a comfortable exchange with you.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. As you get to know people better, they will likely stop noticing or thinking about your disfigurement at all.

When someone is clearly trying to be friendly and supportive, and they are genuinely curious about your story and not just prying out of morbid fascination, try coaching them a little about how best to ask their questions or what they can say or do that is positive and not offensive. People who don’t know what to say but want to learn or express their support in some way often appreciate you giving them your perspective on how to talk about cancer, which is a difficult and uncomfortable topic surrounded by fear and mystery for many people.

Remember, though your attitude and self-confidence can influence others’ reactions, you are not ultimately responsible for how people react. And people’s first reaction is sometimes not their best. Be patient, provide factual information, share your feelings and give others the time and space to sort out their feelings. Walk away without guilt if a person’s reactions are simply unacceptable or they continue to be intrusive or insensitive after you make some effort to change the conversation.<


References

1 Lebel S, Castonguay M, Mackness G, Irish J, Bezjak A, Devins GM. The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho-Oncology. 2011 Sep 19.

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