Family issues faced by women with bleeding disorders and importance of psychological help in overcoming them

Abstract

Family plays an important role in overall development of an individual. The contribution of family in making women with bleeding disorders more empowered and self sufficient cannot be overlooked. These women face numerous family issues right from their childhood till adulthood. Such issues range from parental neglect to sibling rivalry to adjustment problems and others. Persistent unresolved family issues can lead to distorted self image, low confidence, guilt and feelings of inadequacy in women suffering from lifelong and chronic bleeding disorder.  Most of the time, family issues affect woman’s psychological functioning to a large extent. Therefore, seeking help from psychologist/counselor could be of great value. These professionals not only facilitate resolution of family issues faced by women with bleeding disorders but also play an important part in improving and enhancing psychological functioning of afflicted women.

Keywords: Self image, Psychologist, Bleeding disorders, Psychological functioning.

 Introduction

Women with bleeding disorders have to face many challenges in life. Besides managing their bleeds they have to make adjustments and compromises to get fitted in the normal individuals’ society. We know that family is important and the same holds true for women with bleeding disorders also. There are families which have a narrow thinking about the diagnosis of the afflicted woman. On the other hand, there are also some families which help the woman in discovering her potentials to the fullest. The attitude and perception of the family helps in making a woman with bleeding disorder an empowered and successful individual of the society, nation and the world.

Every family faces challenges in their own and specific ways. But complications may arise for women with bleeding disorders in a family set up. The issues for such women are quite different from normal women. It is not only about sharing, giving and caring for other family members but to survive and make others acknowledge about their bleeding disorder.

1.     

Denying the diagnosis

The first issue that can be witnessed is denying the diagnosis of woman with bleeding disorder. This is mostly seen in families of newly diagnosed patients. However, there are families that fail to accept the condition of the woman despite of knowing about it for many years even after getting a diagnosis. Reacting to their denial, the woman will be forming a perception about her disorder. Constant denial might develop guilt in the afflicted woman.

2.     Sibling jealousy

It is generally seen that families, especially parents, tend to give more attention, care and concern to the suffering member/child. The root cause of sibling jealousy takes birth from the extra care, affection, attention and concern provided to the afflicted one. Normal siblings develop interpersonal problems with the diseased sibling and tend to resent her. Normal siblings in the family may feel neglected and distanced from their parents because they believe their diseased sibling has more love from the parents. They may exclude their suffering sibling in games, play activities and other sources of enjoyment. In adulthood, the issue of sibling jealousy takes a different form. It might remain latent and come into limelight even after many years. So the woman who has a chronic bleeding condition has to face this additional challenge of getting and gelling well with her own siblings.

3.     Indifferent attitude of one of the parents

Mothers may tend to give more importance to their daughter’s needs having a bleeding disorder than to the needs of the rest of the family members. This may sometimes result in fathers thinking that they are being neglected and not given importance by their partner. Fathers may then behave in a hostile manner with the afflicted one. This hostility might not be evidently visible but might be projected in behavior of the father. The woman may feel guilty of creating distances between her parents. If guilt develops in woman with bleeding disorder then it needs to be addressed appropriately and resolved immediately. This can be done by consulting a professional who has expertise in dealing with relationship issues. Guilt also serves as a basis for development of fragile ego strength and poor self perception in women suffering from various bleeding conditions.

Every individual has various potentials of achieving success at academic, professional and personal front. The same principle is applicable for women with bleeding disorders. Sometimes parents may feel that their daughter cannot do a particular thing and they dis-empower their child from pursuing ultimate life’s goal. This in turn can create diminished self image and less confidence in one’s potentials and abilities. The aim is to make ailing women empowered and independent, rather than telling them what they can do and what they cannot do in their life. The focus of parenting must be on the strengths of the individual suffering from chronic bleeding condition. Motivation works as a facilitator in achieving one’s dreams and goals in life. If significant figures of the sufferer doubt her capabilities then it can lead to feelings of self insufficiency and self doubt.

4.     Financial problems

Economic status of a family also matters a lot when there is a woman with bleeding disorder in the family. The expenses spent on treatment of such woman might be an important issue for the family as well as for the patient too. At times, families with low economic status fail to provide quality treatment to the afflicted woman. This in turn, creates other medical complications for women with bleeding disorders. Some women cannot even afford to buy medicines like hormonal pills to treat their bleeds. On the other hand, factor infusions remain a dream for women with moderate/severe form of bleeding disorders having a low economic status. Here the patient might blame oneself for the stressful environment of the family.

5.     Issues related to marriage

Marriage is a challenging issue for women with bleeding disorders. Families tend to pressure the suffering woman to get married, even when they know about her bleeding disorder. In an Indian family setting, having a daughter with bleeding disorder is considered to be taboo. Sometimes parents might not reveal the disorder of their daughter when marrying her off in another family. This creates problems in future not only for the woman but for the parents and other family members too. Making adjustments in family needs support from other family members as well. For a woman with bleeding disorder starting a new family life after marriage might be extremely challenging especially when she has become a part of a family which had no information about and exposure to bleeding disorder. Various family members may have differing expectations from the woman but living up to their expectations is a tough and challenging thing. She might face problems of making her new family members understand that her disease is real and it really creates problems and pain for her.

6.     Issues surrounding childbirth

Child birth is an important decision in one’s life. This becomes a complicated for women with bleeding disorders. These complications account for heavy blood loss during delivery and post delivery recovery of the woman. The partner might want a baby but the woman feels that it could be very challenging for her. This could lead to disagreement and misunderstanding between them. Moreover, it may leave the woman to compromise in order to sustain the relationship with her partner.

7.     Problems of extended family

If the suffering woman lives in an extended family then complications are doubled. There might be family members who may ignore her bleeding problem and think that having an unseen disorder cannot affect the functioning of an individual. Such a situation arises out of less awareness about bleeding disorders of women. Few people may acknowledge that women can also suffer from bleeding disorders but unfortunately majority of individuals think that it is only the disease of men. In such a scenario the woman has to face non - acceptance of her family members. The woman might feel rejected and unaccepted by the family. 

8.     Problems of mother child relationship

Another important issue is the mother - child relationship. Sometimes women who have moderate/severe form of bleeding disorder might not be able to take care of their babies/kids, which may lead to distances between both of them. Such women must be encouraged that they have potential of taking care of their babies/kids despite of their disorder. Motherhood is a special period in one’s life and women with bleeding disorders can also live every moment of it.

Discussion and conclusion

As highlighted above, there are numerous family issues a woman with bleeding disorder faces from childhood till adulthood. The complications might result in failed relationships with other family members and might leave the woman with a sense of loneliness and failure. Psychological interventions at the primary level might play an important and crucial role in helping both the patient and family members to work effectively on these issues. The step in preventing or minimizing such family issues is to help family members attain a thorough knowledge about the woman’s disorder and how it affects various aspects of her life. A counselor or psychologist then could plan a session with the whole family so that underlying fears and apprehensions could be addressed directly. If the psychologist thinks that specific family members are not gelling well with the afflicted one then focus could be directed towards them. Family dynamics and functioning of the family affects the suffering woman to a great extent. If problems are arising out in context of other members then they must be tackled effectively with the help of professionals who can help both the woman and family members. The role of a psychologist cannot be underestimated as his/her skills could help the woman and the family to come close and work in a symbiotic association with each other while acknowledging the bleeding disorder of the afflicted. Issues associated with low self esteem, confidence and distorted self image can also be addressed by working in close collaboration with the psychologist/counselor.

In a nut shell, family issues will always be faced by women with bleeding disorders. Unresolved family issues can prevent such women from living a satisfying life. Thus, psychological help could be positively influential in making family environment, dynamics and relationships more fruitful for women with bleeding disorders.