HoG Handbook

For Spouses and Partners


hand holdingIf you are in a relationship with a person with a bleeding disorder, you both face the same challenges of any relationship. All couples are concerned with money, career demands, and family planning issues. All couples must work to build close, loving relationships. The problem-solving skills and communication methods you develop to meet these challenges are the same ones you will use to face concerns about the bleeding disorder.

As the partner of someone with a bleeding disorder, you face some special issues which have no easy answers. Some of these are family planning in view of a genetic disorder, bleeding and bruising during sex, and bruising leading to accusations of abuse. The more you know about these issues, the better able you will be to deal with them. Most of these issues are discussed in The Handbook. The staff at the HTC is also a good source of information.

A chronic health condition can be stressful for both partners. You may worry about how your partner’s bleeding disorder affects their general health. You may worry about the cost of medical care. You may worry about your partner becoming infected with HIV from a blood transfusion. Chances are that your partner is worried about these things too. However, each of you may deal with your worries in a very different way. Here are some examples:

Mr. Jones wants to handle his own hemophilia care and go for all his medical check-ups alone. His wife wants to be involved in his treatment and feels left out. She does not think her husband realizes that hemophilia has an impact on their marriage.

Linda is worried that if she becomes pregnant the child will inherit Tony's platelet disorder. She wants to talk about her fears. Though Tony is worried too, he refuses to discuss it.

Both of these situations result in tension between the partners.  If you have faced similar situations, you may wonder what to do.  First of all, you may find it helpful to read the section for adults with bleeding disorders.  It describes some of the common reactions to having a bleeding disorder.  It may help you understand some of the feelings behind your partner's actions.

Of course, no two people have the same feelings and reactions. The way for you and your partner to understand each other is to keep talking. There are many different styles of problem-solving. Finding the best problem-solving method for you and your partner is an ongoing, ever-changing task. What works today may not work tomorrow. However, being able to keep open communication, to share ideas and concerns, is the basis of any problem-solving method. You need to be willing to listen to each other. When you and your partner can share feelings and ideas without judging each other, you are moving toward the "give and take" needed for a lasting and happy relationship.

It may take some practice to learn to talk openly with your partner.  The section About Feelings offers some suggestions.  One communication technique that works for some couples is a "hearing session."

Steps for a Hearing Session

  1. Find some place to talk where you won't be interrupted.
  2. List for your partner three things he or she has done recently that you have not liked or that have upset you.  Be specific.
  3. List for your partner three things he or she has done recently that you have liked or that have made you feel good.  Again, be specific.
  4. Give your partner a chance to make the same two lists for you.

Note: While each of you is listing things, the other person is not to disagree, justify actions, or defend themselves. This is the time for one person to talk and the other to listen. After you share the lists, you can ask each other for reactions. The purpose of this exercise is to help you start talking about behaviors and feelings without judging.

If you and your partner find you have conflicts you cannot resolve, you may consider asking for counseling from a professional. Sometimes, someone who is not involved can offer insight and guidance. An unbiased viewpoint may help you find new ways to solve problems.

Some people are less willing to seek counseling than others. A common myth is that people who seek help are weak or incompetent. The truth is it takes a lot of self-esteem to be willing to seek help. A person who seeks help to change behavior patterns that are not working really cares about themselves and the relationship. If you and your partner cannot agree to seek counseling together, either of you may go alone.  Making the decision to get professional help is not easy. However, the benefits are usually worth the effort.

When people learn you are in a relationship with someone who has a bleeding disorder, they may make occasional tactless remarks. They may ask rather personal questions such as about your plans for having children. You may want to find a way to fend off questions that are not anyone else's business. You might say, “I’m surprised you would ask such a personal question,” and change the subject. Sometimes humor works. Keep in mind that most people know very little about bleeding disorders. You can help the situation by giving them the facts. Teaching them about the bleeding disorder is not the same as answering personal questions. Respect your partner's right to privacy when people ask you about their bleeding disorder, health, or any other personal information.Couple on beach

Although you may not want to discuss something your partner considers private, it is still helpful for you to express your own feelings and concerns to someone you trust. You also need someone to answer your questions about the bleeding disorder. The professionals at the HTC are there for you.  You may find it helpful to join a support group of people who have concerns like yours. Other partners of people with bleeding disorders may be a good source of support or problem-solving ideas. If you would like to meet other partners or if you have any other questions, talk to the social worker at the HTC.