Notes to Adults with Bleeding Disorders
The ease with which you adjust to having a bleeding disorder may vary throughout your life. It will depend on your age and outside circumstances. You may or may not have any of the reactions, such as withdrawal or denial, that others have. These reactions are an effort to cope with the stress of health problems. However, they can sometimes interfere with day to day living more than help a person adjust.
Withdrawal is becoming distant or isolating yourself from others. People who withdraw from friends and family may tell themselves that they do not care about others and that others do not care about them. They may believe that coping with isolation is less painful than trying to form lasting and close relationships.
If you find yourself withdrawing or becoming distant from others, explore your reasons for doing so. Perhaps you worry about being a burden to your family. Maybe you do not want to strain close relationships with medical problems. Other possible motives are physical pain, a desire to punish yourself, or fear of rejection.
Withdrawal can be both physical and mental. Your sense of isolation can be increased by your thinking that no one understands or that others treat you as being different or flawed. Even if you have chosen to distance yourself from others, you may begin to feel that they have deserted or rejected you. As you begin to feel more insecure, you begin to lose your sense of self-worth.
It often takes great effort to reach out to others, especially if you are laid up in bed. If you do reach out, however, you most often will find that friends and family are more willing to share your problems than you expect. Tell the people who are close to you when you feel lonely, rejected, or worried. Expressing these troubling feelings is more helpful than withdrawing.
Other ways to fight feeling alone and insecure are to learn to do something new or to join a group with a common interest. Learning a new skill, whether it is designing a website or learning to play a musical instrument, can boost your self-confidence and feelings of self-worth. Joining a club or organization can give you a sense of belonging. Because it is very hard to withdraw when you feel needed, give your time and effort to a worthy project.
If you feel unable to talk to family or friends and feel very lonely, your social worker can help. Many places have support groups for people with life-long health problems. You may find it helpful to share feelings and experiences with other people who have bleeding disorders. To find contacts in your area, call your local hemophilia organization or your treatment center.
A second way of coping sometimes used by people with a bleeding disorder is denial. Denial is refusing to admit and accept that you have a bleeding disorder. It is also refusing to admit you have any limitations because of it. You may or may not be aware that you do this. Some people who deny having a bleeding disorder begin taking foolish risks. Although risk-taking is a necessary part of life, the person who is denying a bleeding disorder may take needless and unreasonable chances.
Because men with VWD or a platelet disorder do not have to be concerned about bleeding during periods or childbirth, they may downplay their disorder. They may neglect to tell health care providers about their disorder and refuse to wear a MedicAlert® bracelet. This can lead to serious problems if they are in an accident or need surgery.
If you admit that denial is not a helpful way of coping, you have taken the first step toward working out a healthy response to having a bleeding disorder. Everyone has limitations. Part of being mature is learning to accept your own limitations and to make the most of your unique abilities. Do everything you can to give yourself as much control over your life as possible. Then take each day as it comes.
Your bleeding disorder is the result of circumstances beyond your control. Remind yourself that most of the time you can keep it from interfering too much with your daily life. If you do begin to feel that you cannot cope with your bleeding disorder or the way your life is going, the people at your HTC are there to help. They understand the feelings and reactions you are likely to face.