How Much of My Identity Should Be Tied to My Bleeding Disorder

Ask a Social Worker: How Much of My Identity Should Be Tied to My Bleeding Disorder?

Advice from our experts on how to navigate this complicated question.

Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].


Dear Christi and Amy,

Sometimes I feel like my personal identity is too closely aligned with my disorder, and then sometimes I feel guilty for wanting to abandon or downplay that part of me. How do I balance this?


Thank you for bringing forward this very important question. Exploring our own identities and how we want to be in the world is a lifelong and important process. Identity is influenced by our environment, physical/internal life, and social factors, as well as life circumstances, our place within society, and how we were raised. Identity naturally changes and evolves over time.

Erik Erikson, an early mental health pioneer, helped explain this process through his developmental stages model. He defined tasks that influence the formation of identity at each stage of life. In childhood, we learn to trust others and test our autonomy. As teenagers, we begin to assert more independence and start to question who we are. Eventually, we become adults, exploring intimacy, career paths, and the development of integrity.

The influence of identity motivates how people set up their physical environments and social lives, and it impacts how they manage their emotions and thoughts. If a person experiences a physical limitation or a chronic medical condition, there can be a threat or challenge to who they think they are. These challenges elicit real and valid emotions and concerns, which prompt reflection and intentional exploration to put things into perspective. We can become lost to shame, guilt, confusion, frustration, and despair about what and who we are if we don’t consider the evolution of identity as part of a healthy mental health regimen.

Having a chronic medical condition is common; more than half of adults in the United States have one. Unfortunately, we get messages from society that having a medical condition is a deviation from the norm. Somehow, we are taught that perfect health is achievable, even though the actual human experience is for the body to change and deteriorate. How the body functions and what is believed about the body impact our choices around profession, friends, and life mates. Often, we make adaptations that influence the kinds of activities we explore and our overall interests and hobbies. Our experiences then influence how we see ourselves and, ultimately, how we feel about ourselves. 

People with bleeding disorders have a variety of reactions to having a genetic, chronic medical condition. Some become completely avoidant of the bleeding disorder and deny that it affects their experiences, thoughts, and feelings. Others centralize the bleeding disorder experience within their lives and often find that the bleeding disorders community becomes a place for them to work, play, and gain support. Many others have a mixture of these reactions. If something is out of balance, people can experience an “identity crisis,” questioning the values and attitudes that have brought them this far.

Erikson’s model is useful to put this “crisis” into perspective and to understand that this kind of angst is normal and good work for anyone seeking balanced mental health. There are many ways to explore your own values and readjust your behaviors. Journaling, talking to friends and family (parents’ identities can shift, too), and seeking out the social work staff at your hemophilia treatment center (HTC) or local National Hemophilia Foundation chapter can be helpful ways to begin exploring these very important questions.

Finding safe people who offer connection and support is also important in gaining perspective and creating changes that feel right for you. Feel encouraged to explore what a bleeding disorder means to you and how you want it to impact your identity. The exploration itself will help reveal the answer to the question of “How do I balance this?” As your sense of self and definition of identity become clearer, and as you find roles that feel right to you, confidence and creativity will emerge. There is no right or wrong way — just your way. As Erikson shows, this is a lifelong and very normal process.

While doing this work, if you find yourself feeling hopeless, down, anxious, or overwhelmed, there is support for you. Please reach out to your HTC or chapter social worker to determine if you could benefit from formal counseling. Mental health professionals are often paid through insurance, or other local community resources may be able to assist you in paying for treatment.

If you or anyone you know has a mental health emergency, call 988, a crisis line that is available nationally. Mental health emergency assistance is also available at your nearest emergency room. 

Exploring identity and how a bleeding disorder fits into your life is valuable and useful. Sharing that developed wisdom is also valuable. Creating opportunities to share your experiences in and outside the bleeding disorders community can help you to develop your own path. You never know how your experience will help the next person along the way. 

— Christi Humphrey, LCSW

Humphrey works at Hemophilia of Georgia in Atlanta. She is a member of the Social Work Working Group.

 — Amy Wilson, MSW, LICSW, ACM

Wilson is a social worker at the University of Minnesota’s Center for Bleeding and Clotting Disorders in Minneapolis and the chair of the Social Work Working Group.