Managing loss of identity for people with a visible difference

Whether you were born with a visible difference or disfigurement, have had it from early life or acquired it later in life, you may experience feelings of loss – particularly loss of identity – related to your appearance.

On this page, we explore why we feel loss and how you can manage these feelings.

What is loss?

We experience feelings of loss when something important and valuable disappears from our lives. Loss comes in many forms. You could experience the death of someone close, the end of a close relationship, or lose something you value, like your job or your home. Having or acquiring a visible difference or disfigurement can also lead to a sense of loss.

What does loss feel like?

Loss is closely connected to grief, and many people go through the five stages of grief when they experience a loss of any kind. Although it cannot take the sadness of loss away, it can help to understand these “stages” and how they can affect you.

• Denial: “This isn’t happening to me”.
• Anger: “Why is this happening to me?” – resentment, looking for blame or fault.
• Bargaining: “If I do everything I can, the condition will improve / go away”.
• Depression: “I can’t cope with my life like this”.
• Acceptance: “This is me now”.

Although these feelings are referred to as “stages”, the reality is that people can experience one or more of these feelings at different times and may go back and forth between them.

More generally, feelings you may experience include:

• Confusion
• Disbelief
• Panic
• Overwhelm
• Sadness and depression
• Shock and numbness

You may also feel very tired or a sense of exhaustion. If you’re experiencing an acute sense of loss, this can affect your life in other ways. For example, you may:

• Have trouble sleeping
• Notice changes in appetite
• Experience physical health problems
• Avoid other people

Loss of identity and visible difference

If you have a visible difference, it is common to experience a sense of loss connected to your looks and body image. You may experience a feeling of loss of identity. Although it may seem less obvious to you or others, it is valid and normal to feel this way. There are many studies exploring the feelings of loss experienced by people with a visible difference or disfigurement. Some academics talk about the idea of the “self-concept” – the idea we have of ourselves – and its close relationship to body image. A change in the appearance can shake this self-concept.

Your experience of this might vary, depending on whether you have had your visible difference from birth or childhood, or acquired it later in life. Studies also suggest that for some people in certain circumstances a change in appearance may have a minimal impact on their sense of identity, for example, if it fits in with their self-concept.

Visible difference from birth or early childhood

You can feel a sense of loss if you were born with a visible difference or disfigurement, or acquired it in early life. This is likely to be a loss of how you imagine life might have been if you didn’t look different to others.

Some people feel that their lives would have been easier, more successful or happier if they didn’t have a visible difference. You may find yourself blaming your condition, mark or scar for things that go wrong in your life or which you are unhappy about. You may feel this more intensely in periods of change or difficulty.

Change of appearance in later life

If you acquire your visible difference or disfigurement later in life, this can shake your internal body image and you may experience a strong loss of identity. This can have a big impact on your health, affect your feelings of femininity, masculinity or your sense of who you are, which may to some extent be tied to your appearance. Studies suggest that people who acquire a visible difference later in life – particularly after puberty – tend to find it harder to adjust to a change in body image and self-concept. You may find yourself contrasting your “new” appearance with your what you think of as your “real” self.

You may also feel as if you have lost control over your life, your relationships or your work. You may have a strong sense that you are perceived differently now to how you were prior to acquiring your visible difference. You may also find yourself subject to questions, comments and staring. This can make everyday activities and encounters with others challenging and you may find it harder to develop relationships and make friends. These changes can affect your sense of self, particularly if they are things you found effortless before acquiring your visible difference.

Adjusting to a visible difference

If you are experiencing feelings of loss because of your visible difference or disfigurement, the first thing to remember is that these feelings are normal, important and valid. It takes time to adjust to a condition, mark or scar which affects your appearance.

You may not experience feelings of loss straight away. This may be because you are too young or not yet aware of your visible difference. Or you might be dealing with medical treatments or a change of function, trauma and coming to terms with what has happened to you. It may be that you start to experience these feelings of loss later on.

Managing feelings of loss

It is important to look after and be kind to yourself. If you feel shocked, angry or depressed, remember that it is OK to feel this way. Give yourself time and, if you feel like it, talk to someone you trust. You may find it helps.

If you are having treatment or surgery, it may take longer to feel better emotionally. This is because the treatment might feel difficult or painful, or you might not know what things will be like for you in the future. It may be that, for a while at least, things keep changing.

For example, if you are recovering from a burn injury, your appearance can change over time, as can the functioning of the body. Similarly, if you have a genetic condition, you may have surgery and this might change your appearance, meaning that you have to adjust to this change over time. Scar tissue can take time to heal and may go through several stages. It can take time to adjust to your feelings about this.

Accepting loss

You might find it hard to believe that you will ever overcome these feelings, but as grief progresses, most people slowly adjust and accept what has happened.

It is important to remember that acceptance does not mean you have to be happy about what has happened to you, or your visible difference – acceptance is an understanding that this is the way things are and about building a life for yourself taking this into account.

This might mean accepting that you might not be able to play sport if you have difficulty with movement – but you might start to look at other hobbies and interests. You don’t have to be happy that you gave up sport – this might feel very difficult and sad but exploring a new hobby or interest can be exciting and fulfilling.

How to get further help

Dealing with feelings of loss because of a visible difference or disfigurement can be very difficult and you may struggle at times. Do not feel you are alone.

It can help to talk to someone trained to listen and who can help you to explore and think about your feelings, and how you might cope. You may like to contact your GP or speak to us at Changing Faces.

If you have difficulties sleeping, repeated flashbacks, struggle to concentrate or feel very sensitive, it is important to speak to your GP. They can refer you to a specialist who is qualified to talk to you about these difficulties and can help you find methods for managing them.

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