Living with a blood disorder is more than managing physical symptoms…it carries emotional and psychological challenges that touch every part of daily life. For patients and families, the stress, uncertainty, and vigilance required can affect mental health in profound ways.
At the Center for Inherited Blood Disorders, we recognize that comprehensive care includes emotional wellbeing alongside medical care. In this blog, we explore how mental health intersects with blood disorders, the support available, and strategies for coping, with insights from our psychologist, Anton Petrenko, PhD.
Why Mental Health Matters
Chronic illness, especially rare blood conditions, can significantly affect emotional wellbeing. Anxiety about health episodes, limitations on activities, and the long-term impact of complications can create a persistent emotional burden.
How does living with a blood disorder uniquely impact mental health, and why is this often overlooked?
Whether we’re talking about living with hemophilia, a platelet disorder, or sickle cell disease, living with blood disorders comes with unique challenges. Each disease comes with its own history full of setbacks and triumphs, which can certainly affect how patients see themselves and their role in the medical community. Blood disorders are often overlooked because they are ‘invisible’ – there are no obvious signs of impairment like a wheelchair or a broken arm in a cast. To the outside observer, individuals with blood disorders look perfectly healthy, and it may come as a surprise that there are limitations. Fortunately, there are organizations that can help! In addition to all of us at CIBD, there are many community support organizations like our friends at Hemophilia Foundation of Southern California and Sickle Cell Disease Foundation. These organizations provide education, peer support, advocacy, and much more!
The Daily Emotional Experience
Patients often face stress and fear in everyday moments:
- Worrying about injuries or chronic pain that others wouldn’t think twice about
- Feeling limited in activities with peers
- Coping with frequent monitoring, infusions, and hospital visits
How can chronic health vigilance affect a person psychologically?
At CIBD, we encourage our patients to monitor their health, look out for injuries or bleeds, and to be consistent with medications. However, staying OVERLY vigilant for health issues keeps people on edge. Long-term stress can turn into anxiety or possibly even depression. Additionally, patients who are on too high of alert may be triggering the body’s “fight or flight” response which impacts the digestive system, immune system, hormones, sleep cycle, and can lead to hypertension. The impacts of this long-term “fight or flight” system activation causes wear and tear on the body. This is a really good example of the mind-body connection and why integrating mental health into health clinics is the ‘gold standard’ of patient care. At CIBD, we look out for patients’ physical AND mental health – both need to be addressed for optimal health.
How do children, teens, and adults experience these challenges differently?
Young children are often oblivious to their health condition, and it is up to parents to find the balance between doing too much and doing too little. Older children and teens are often knowledgeable about their medical condition but aren’t always good at making the right decisions. This is because the brain isn’t fully developed until the late 20s; the frontal lobe is still developing and learning how to regulate emotions and behaviors. Ideally, by adulthood patients have learned to balance activity, have developed a support network, and are knowledgeable about how to respond to health issues.
Family and Caregiver Impact
Blood disorders affect entire families. Caregivers often carry significant emotional weight, balancing protection with independence for their loved ones. Chronic stress, worry, and burnout are common.
What mental health challenges do caregivers face, and how can they maintain resilience?
Having responsibility over a medically complex child is a heavy burden to carry – there are medications, appointments, and health symptoms to constantly keep track of. Anyone who has ever had to poke their own child with a needle or has watched their little one face high levels of pain knows how hard this can be. But like everything else in life, it gets easier with time and practice.
The biggest suggestion I have for parents is to pay attention to their own thinking about their child’s medical journey. Examine your thoughts and decide: are these helpful or not helpful? Examples of unhelpful thoughts include “this will never get better” “he’ll hate me forever if I do ______” and “I can’t do this”. These types of thoughts lead to stress, anxiety, and sadness which kids definitely pick up on! In contrast, helpful thoughts like “he’s strong, he’ll handle this”, “short-term this is hard but long term it will get better” and “I’m doing what the doctor recommended” make us feel better. In short: think good, feel good. You got this!
Mental Health Across the Lifespan
Mental health needs change over time. Children may struggle with fear, isolation, or school participation. Adolescents face identity and independence challenges. Adults may face anxiety about relationships, work, and long-term health.
What life transitions are particularly challenging for blood disorder patients?
The two biggest transitions are starting school at ages 2-5 and transitioning to adulthood at 18. I often hear from parents how unnerving it is to send their young children to daycare, preschool, or kindergarten for the first time. This is REALLY scary for parents because they are used to having full control and 24/7 supervision over their child. Now, strangers start providing supervision and keeping track of health symptoms. So, what helps with transitions like these? Planning, taking things slowly, and reminding yourself that millions of other medically complex kids have made the same transitions before. Planning for any transition is important – for younger kids this step can involve researching preschools, providing schools with detailed instructions for how to handle health emergencies, and wearing a medical alert bracelet to make others aware of their condition. Slow, gradual transitions tend to work best. Maybe parents can schedule tours of a school for their child, or children can start getting used to being away from parents by trying extracurricular activities (swimming, soccer, and community art classes are all good ideas!).
Later in life, turning 18 is an exciting – and somewhat scary – milestone. Patients now have medical decision-making rights, and they are responsible for their own appointments, healthcare, and medications. Not to mention that many youth at this age are navigating a transition to college or into the workforce. There’s a lot going on at this age and the weight of ‘adulting’ can feel overwhelming.
Planning and preparing for transition to adulthood helps. Things like learning about medications during the teenage years, practicing scheduling their own appointments, and teens speaking up for themselves during medical appointments makes the transition to adulthood much easier. In fact, at CIBD we have children practice speaking about their own health condition and learning about insurance, privacy practices, and accessing CIBD’s contact information during social work visits starting at age 10! And of course, even after someone turns 18 their family members can continue to help – the transition to independent health care management is usually gradual. Baby steps!
Barriers and the Role of Comprehensive Care
Despite growing awareness, patients often face barriers to accessing mental health care, including:
- Limited access to mental health specialists
- Stigma around seeking psychological support
- Insurance or cost-related restrictions
At CIBD, we address these barriers through a multidisciplinary, patient-centered model that integrates mental health support as a core component of care. Social work, psychological counseling, care coordination, and education are provided alongside hematology, infusion, and pharmacy services, ensuring patients receive holistic support.
How does integrating mental health into comprehensive care improve outcomes?
Integrating mental health into medical settings is a relatively new concept that has received a lot of research support over the past several decades. Studies have shown that integrating mental health treatment into medical settings reduces depression and anxiety and improves well-being and quality of life (Coughtrey et al., 2018).
One cool perk of my job as CIBD’s psychologist is that I can see patients during medical visits at CIBD, at CIBD’s infusion center, or even if admitted to Children’s Hospital of Orange County (CHOC)! This ability to meet patients where they’re at allows me to provide mental health care to patients as they are facing health challenges in real time. I think of this as being “in the right place at the right time.” Fortunately, the medical community has embraced the integrated physical + mental health care model. As one example, there are now over 50 psychologists who work at CHOC, which has more than doubled over the last decade!
(Coughtrey, A., Millington, A., Bennett, S., Christie, D., Hough, R., Su, M. T., … & Shafran, R. (2018). The effectiveness of psychosocial interventions for psychological outcomes in pediatric oncology: A systematic review. Journal of Pain and Symptom Management, 55(3), 1004-1017.)
Practical Support and Coping Strategies
Patients and families can take active steps to support mental health:
- Develop coping strategies for anxiety and stress
- Build a support network of peers, family, and professionals
- Advocate for mental health needs within care teams
- Use mindfulness, journaling, or therapy to manage emotional strain
What coping strategies are most effective, and how can patients and families start incorporating these into their routines?
The top 3 coping skills we teach in pediatric psychology are diaphragmatic breathing, progressive muscle relaxation, and guided imagery. These techniques can be used anywhere and at any time, and (importantly!) they help calm down our bodies. There are plenty of free YouTube videos out there if you’d like to try these skills today!
But there are many more coping skills out there. I often go through a handout of 99 coping skills with patients and it always strikes me how patients react so differently to ideas on the list. Some love to dance in their room, play video games, or take their dog outside. Others knit, curl up with a good book, and play board games with friends. For others, favorite coping skills include cooking, organizing their room, or doing their nails. There are SO MANY different coping skills out there – the only way to figure out what works for you is to try lots of different things!
What signs may indicate it’s time to seek professional mental health support?
Everyone worries, experiences sadness, gets angry, and feels overwhelmed at times. Those are normal human emotions. Emotions help motivate us to do things – a student who worries about an upcoming test is driven to study for it, or a teenager who is overly sad or bored reaches out to friends for comfort. However, if emotions begin to interfere with functioning, it may be time to seek professional help. Things like withdrawal from social relationships, impaired academic or work performance, and reduction in self-care can be red flags. Even bigger red flags would be hopelessness, self-harm, or thoughts about ending one’s life. In addition to short-term therapy available at CIBD, there are MANY local and national resources out there to support patients’ mental health, including mental health clinics, support groups, and mental health crisis hotlines like the recently established 988 hotline which you can call or text.
Hope, Resilience, and Community
Despite these challenges, the blood disorder community demonstrates remarkable resilience. Patients, families, and healthcare providers work together to create hope, empowerment, and stronger support systems.
What message would you give to patients and families navigating these challenges?
Just remember: you’re not alone. There are amazing people here to support families like yours! At CIBD we have many dedicated professionals – everyone from case managers and nurses to our nutritionist and the physical therapy team. Outside of CIBD there are community organizations, local meet-ups, conferences, and advocacy events. There are walks, podcasts, blogs, and mentorship programs. Teens can apply for scholarships and leadership training programs. There are websites, educational videos, and even FREE SUMMER CAMPS. There is so much support out there. We’re all in this together. You’re definitely not alone!
At CIBD, we are committed to supporting the whole person. Mental health is an essential part of comprehensive care, and by addressing it openly, we help patients and families thrive in the face of blood disorders.
This content is provided for educational purposes only and is not intended as a substitute for professional mental health advice, diagnosis, or treatment. If you or someone you care about is experiencing emotional distress, anxiety, or depression, please seek help from a licensed mental health professional. In case of an emergency or if there is any immediate risk of harm, contact local emergency services or call 988 (Suicide & Crisis Lifeline in the U.S.) immediately.