Living with Immune Disorders: Patients Share Their Journeys of Adaptation

Inborn errors of immunity, rare conditions that affect how the body's immune system works, can lead to unusual infections, autoimmunity, inflammation, and even cancer. Adapting to these conditions involves integrating the challenges they bring into daily life. Poor adaptation can lead to mental health issues and reduced overall well-being. Most people with chronic illnesses and rare diseases find ways to adapt over time, but there's not much known about how this process happens. To fill this gap, we talked to 20 adults who consider themselves well-adjusted to their inborn errors of immunity. Three main themes emerged from their experiences. First, many people went through feelings of shame and loss but learned to accept and be kind to themselves. Second, having knowledge about their condition and making choices gave them a sense of control, though they also had to deal with unpredictable symptoms. Lastly, social relationships played a big role in their adaptation, either positively or negatively. Interestingly, many found purpose in educating others about their condition. Adapting to life with these immune disorders is a complex and ongoing journey. It requires people to constantly adjust to new challenges as they go through different stages of life. Healthcare providers can use these insights to better support their patients.