Prioritizing Mental Health as a Sickle Cell Warrior, Caregiver, and Healthcare Worker

As an individual living with sickle cell, caregiver, or healthcare worker, you may be accustomed to prioritizing physical health needs above all else. However, mental health is critical for overall well-being and should not be ignored. Although mental health challenges can be stigmatized and overlooked in the Black community, it is important to erase the stigma and seek the care that is needed. In this mental health toolkit, we discuss the importance of prioritizing mental health as a sickle cell warrior, caregiver, or healthcare worker and how therapy can help to achieve that goal. This resource is a sample of what is offered in the Sickle Cell Community. If you have additional resources please let us know by clicking here.

Why Mental Health Matters for Sickle Cell Warriors, Caregivers, and Healthcare Workers

Sickle Cell Disease (SCD) is a chronic illness that affects both physical and emotional health. Individuals living with SCD may experience chronic pain, fatigue, and other physical symptoms that can negatively impact their mental health over time. Caregivers may experience emotional stress from caring for a loved one with SCD, while healthcare workers may experience burnout from caring for chronically ill patients. “Patients often feel misunderstood about the trauma of being ill. Missed work, school, and life in general can make it hard for a person with sickle cell to cope. Trauma surrounds each hospitalization and every emergency room visit.” said Heather Avant, a professional photographer and Sickle Cell Warrior. Seeking therapy can provide warriors, caregivers, and healthcare workers with the emotional support and coping skills needed to manage the mental health challenges associated with SCD. As a result, each group mentioned should regularly assess their mental health from time to time.

Erasing the Stigma of Therapy in the Black Community

The “I Believe in Therapy Campaign” is incredibly important to us because Mental health stigmas can prevent individuals in the Black community from accessing therapy and seeking treatment for mental health challenges. Discussing mental health and seeking care can be especially challenging for individuals in positions of caregiving or healthcare service, as it may feel there is a weight of expectation to be the perceived helpers instead of the helped. “Having support, perspective, and options is essential when addressing the mental health challenges that arise along our health journey, said Dr. Majorie Dejoie-Brewer, a physician and Sickle Cell Warrior. Seeking therapy, however, is far from weakness; in fact, it’s a proactive step towards a path of healing and mental well-being.

To erase the stigma of therapy in the Black community, it is essential to have open conversations about mental health. It is important to acknowledge these conversations can occur in safe and understanding environments such as with medical professionals or, if available, support groups. We must normalize the idea that everyone struggles with mental health challenges and promote seeking help is a sign of profound courage and emotional strength.

Here’s a mental health toolkit for warriors, caregivers, and healthcare workers impacted by sickle cell disease:

1. Talk to a therapist: A mental health professional is a licensed and knowledgeable resource dedicated to treating the mental health challenges associated with SCD. Here are a few great resources to find a therapist:
   1. Cayenne Wellness Center offers free counseling to California residents who are Sickle Cell Warriors
   2. Psychology Today
   3. Therapy for Black Girls
   4. Mental Health America
2. Self-Care Activities: Make time for simple acts of self-care such as exercising, taking a bath, practicing deep breathing exercises, enjoying your favorite hobby, getting adequate sleep, and eating a healthy diet. Also, prioritize doing something special regarding your self-care daily. Elle Cole, author and sickle cell caregiver, says that it’s important for her to create a daily self-care schedule even if she only spends as little as five minutes per day on self-care. She also encourages others to add self-care tasks to phone reminders or a home calendar so it’s incorporated into a person’s everyday routine.
3. Counseling and Support Groups: warriors, caregivers, and healthcare workers should be encouraged to seek counseling to help them manage the emotional toll of this chronic illness. They can also join support groups where they can share their experiences and get support from others who understand what they are going through. Group therapy and support groups exist for individuals impacted by SCD, where individuals can find a vent space as well as a genuine chance for connection and support.
   1. Here are a few online sickle cell support groups that you can check out:
      1. Cayenne Wellness Center’s Community Support Groups
      2. My Three Sicklers
      3. Supporting Our Sicklers (S.O.S.) Parent & Guardian Support Group
      4. Onescdvoice.com
4. Educational resources: It is important for warriors, caregivers, and healthcare workers to have reliable information about sickle cell disease so they can understand its impact on mental health. Organizations such as the Sickle Cell Community Consortium and Sick Cells both provide resources on their website.
   1. The Sickle Cell Mental Health Initiative: The Sickle Cell Community Consortium has created an initiative focused on raising awareness, education, and destigmatizing mental illness for individuals with sickle cell disease. You can find more information on their website: Sickle Cell Consortium Mental Health Initiative.
   2. Medical News Today: This online resource provides an article discussing the link between sickle cell disease and mental health. It offers insights into the challenges faced by individuals with SCD and how it can impact their mental well-being. Read more at Sickle Cell Disease and Mental Health: What is the Link?.
   3. Nicklaus Children’s Hospital: The hospital offers information on mental health disorders in individuals with sickle cell disease. It provides insights into potential mental health challenges such as anxiety, depression, and psychosis, and their causes. Learn more at Mental Health Disorders (Sickle Cell Disease) – Nicklaus Children’s Hospital.
   4. National Institute of Mental Health (NIMH): NIMH provides resources on managing mental health in the context of chronic illness. Their publication on chronic illness and mental health provides insights into recognizing and treating mental health conditions that may arise from living with chronic diseases like sickle cell disease. Access the publication here: Chronic Illness and Mental Health: Recognizing and Treating – NIMH.
   5. Suicide Prevention Hotline: The 988 Lifeline provides 24/7, free and confidential support for people in distress
   6. Cure Sickle Initiative: The Cure Sickle Cell Initiative is a community of individuals living with sickle cell disease, advocates, researchers, and scientists who work together to help the community understand the opportunities that curative gene therapies can bring to assist in curing sickle cell disease in the future.
5. Mind-Body Therapy: Mind-body therapy techniques such as meditation, mindfulness, and breathing exercises can help manage the pain and anxiety associated with sickle cell disease. Warriors, caregivers, and healthcare workers should be encouraged to incorporate these techniques into their daily routines. Check out our Mindful Mondays and the Sickle Cell Mental Health & Wellness Initiative on Sunday evenings at 7 p.m. EST to actively learn new techniques.
6. Positive thinking and goal-setting: Set achievable goals and focus on positive thinking to help cope with the challenges of sickle cell disease. This can help warriors, caregivers, and healthcare workers develop resilience and better manage their mental health.
7. Emergency Preparedness Planning: Develop an emergency plan that takes into consideration the potential impact of sickle cell disease on mental health. This can help individuals living with sickle cell disease, caregivers, and healthcare workers prepare for and manage mental health issues that may arise during an emergency.
8. Regular Check-ins: Schedule regular check-ins to ensure mental health needs are being met. During those appointments, identify any areas where additional support may be needed.
9. Mindfulness Apps: Mindfulness apps such as Calm and Headspace can assist with day-to-day stressors or anxiety. They offer features like breathing exercises and calming guided meditations. There are also a few sickle cell apps that can help warriors keep track of medications, appointments, community groups, and more.
   1. SCD Companion app
   2. The Living Well with Sickle Cell App
10. Communication: Have open and honest conversations with peers and family members about mental health. By sharing a dialogue, it encourages a safe and candid atmosphere of support and understanding.

This toolkit is provided by: