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By:  Mark Flapan, Ph.D.

It’s one thing to accept that you have PXE, it’s something else again to accept yourself as a person with it. If you can, you won’t suffer from the distressful feelings that commonly accompany a chronic illness such as guilt and shame, self-pity, and self-blame, hurt and anger as well as feeling unlovable and undesirable.

What can you do that might help you accept yourself as a person with PXE? You can, among other things, pursue an interest or commit yourself to a life purpose. This can be helpful for several reasons. For one, an interest or life purpose may take the place of what you’ve had to give up because of your illness. For another, the more that matters to you outside of yourself, the less consumed you’re likely to be with what goes on inside yourself. Then, as you come to value yourself for what you do or what you give, it becomes easier to accept yourself as a person with PXE regardless of its physical effects.

The interest you pursue can be something you always wanted to do, to learn, or to accomplish but have put off for one reason or another. It may not be your life-long dream but it can add meaning to your life just the same.

Even more helpful than pursuing an interest, is to commit yourself to a life-purpose over and above that of taking physical care of yourself. A life-purpose can be to try to make some small difference in the world in which you live. There may be a social cause you believe in but have done little if anything about. If your life purpose involves helping other people, the gratitude and appreciation you’ll get, will, without question, enhance your self-feeling and make it easier to accept and value yourself as a person with PXE.

There may be someone in your life to whom you have a special meaning. Someone whose life would be diminished if it weren’t for you. Someone who needs you and loves you. If this is the case, you have a unique life purpose that no one but you can fulfill. Even if there is no such person in your life, there may be others to whom you can give something emotionally.

But you may feel your illness has so limited you, you don’t have much to give. This may be the case when it comes to doing things for others physically but it doesn’t have to be the case when it comes to giving to others emotionally.

You may, in fact, have more to give emotionally than you realize. As it happens, the experiences you have in living with your illness can increase your ability to relate to others in more understanding, feelingful, and compassionate ways than you could otherwise. This is because you know what anguish is like. You know what it is like growing up different. You know what it is like to see your body change before your eyes and your eyes change as well. You know what it’s like to have to depend on others to do things for you or take care of you. You know what it’s like to feel confused about who you are as a person. You know what it’s like to feel alone with all that goes on inside you both physically and emotionally. And you know what it’s like to live with an uncertain future.

As it happens, your value to your husband or wife, to your children or grandchildren, to your friends or to anyone you care about and who cares about you is not what you do for them physically but what  you give to them emotionally. And what you can give to others emotionally, even with your illness, is your attention, your understanding, your concern, your affection, your love and as important as anything else, your appreciation for what they do for you.

There’s no question that anything you do for someone in particular or for a social cause in general will enhance your value in your own eyes and make it easier for you to accept and value yourself as a person with PXE.

By:  Mark Flapan, Ph.D. 3:4 (Fall 1995)