Receiving a diagnosis of hemophilia or a bleeding disorder can be upsetting because it labels us with a problem for which there is no clear cure. Diagnosis is like suddenly falling off a cliff. Abruptly, the life we had before diagnosis vanishes. It’s the beginning of a new life path managing hemophilia.
Stages of Grief
If diagnosis is like falling off a cliff, then grappling with this new reality is like going through the stages of grief. The concept of the five stages of grief was introduced by Swiss psychiatrist Elisabeth Kübler-Ross in 1969. The stages represent difficult feelings experienced during hardships and traumatic events, such as the death of a loved one, a breakup, or confronting an addiction. Grief is experienced by people who find themselves living with chronic conditions, too.
The five stages of grief are denial, anger, bargaining, depression, and acceptance. The stages rarely happen in order, and many people revisit some or all of the stages over and over after diagnosis and during bleeds.
Anger sets in when we acknowledge what we’ve lost – missing after-work cocktails or family dinners, worrying about infusion schedules, running to endless doctor's appointments, and losing friends because they don’t understand why we have to cancel plans suddenly. Some days begin with bargaining and trying to live perfectly in hopes that it goes away. The frustration and disappointment can lead to depression and sadness.
Relief (The New Normal)
An official diagnosis can be the catalyst we need to move us past denial. Relief slowly begins to creep in when this new normal is shared with others. Social support, from friends and family and from fellow members on MyHemophiliaTeam, helps you slowly climb the staircase of grief into a more predictable plateau – the “new normal.” Forging social support from others with bleeding disorders can bring perspective and validation. Walking through life with hemophilia isn’t easy or what we asked for, but it makes all the difference to walk this new path with others who understand. Have you found your new normal?