According to the U.S. Food and Drug Administration, over 7,000 rare diseases affect more than 30 million people in the United States. Many rare diseases are life-threatening, and most do not have treatments. The physical, mental, emotional, and financial burden of living with a rare disease seriously hinders mental health. Rare disease patients may experience a variety of mental health issues, ranging from anxiety and stress to depression.
Mental health is integral to the treatment process for rare disease patients. We’ve compiled resources for overcoming mental health hurdles with a rare disease diagnosis.
Understand Warning Signs
Managing a rare disease is a complex and overwhelming process, so first, give yourself grace. But also know that significant mental health concerns rarely appear “out of the blue.” Mental health challenges can leave you feeling like something is a little off with your thoughts, feelings, or behavior.
Understanding early warning signs and acting ensure prompt treatment. Early intervention can reduce the severity and interruptions in quality of life and function—increasing the possibility to delay or prevent a significant mental illness.
If you’re experiencing the following symptoms, consider following up with a mental health professional.
- Sleep or appetite changes: Dramatic sleep and appetite changes or decline in personal care.
- Mood changes: Rapid or dramatic shifts in emotions or depressed feelings, more significant irritability.
- Withdrawal: Recent social withdrawal and loss of interest in activities previously enjoyed.
- Decline in functioning: An unusual decline in functioning at school, work, or social activities, or difficulty performing familiar tasks.
- Problems thinking: Problems with concentration, memory, or logical thought and speech that are hard to explain.
- Increased sensitivity: Heightened sensitivity to sights, sounds, smells, or touch; avoidance of over-stimulating situations.
- Apathy: Loss of initiative or desire to participate in any activity.
- Feeling disconnected: A vague feeling of being disconnected from oneself or one’s surroundings; a sense of unreality.
- Illogical thinking: Unusual or exaggerated beliefs about personal powers to understand meanings or influence events; illogical or “magical” thinking typical of childhood in an adult.
- Nervousness: Fear or suspiciousness of others or a strong nervous feeling.
- Unusual behavior: Odd, uncharacteristic, peculiar behavior.
- Changes in school or work: Increased absenteeism, worsening performance, difficulties in relationships with peers and co-workers.
One or two of these symptoms alone can’t predict a mental illness but may indicate a need for further evaluation. People with suicidal thoughts or intent or thoughts of harming others need immediate attention.
Find Support
A lack of social support is felt across all types of rare diseases. The key to navigating mental health with a rare disease diagnosis is first identifying a challenge exists and then finding support to remedy those feelings.
Whether through individual or group therapy, support groups, medication, or finding community, managing your mental health is an integral part of the treatment process.
Mental Health Resources for the Rare Disease Community
- The National Alliance on Mental Illness (NAMI): The nation’s largest grassroots mental health organization dedicated to building better lives for millions of Americans affected by mental illness.
- Rareminds: Professional counseling and well-being resources, also offering training for rare disease patient groups and organizations (UK-based).
- Center for Chronic Illness (CCI): Promoting well-being and decreasing isolation for chronically ill patients through support and education.
- Choosing Therapy: Online therapy directory.
- Our Odyssey: Connects young adults impacted by rare and chronic conditions with social and emotional support.
- Compassionate Friends: Providing friendship, understanding, and hope through the natural grieving process.
- Give An Hour: Creating resilient individuals and communities by improving mental health and emotional well-being, one hour at a time.
- Angel Aid: Mental health and wellness services to rare disease families through sustainable psychosocial training, transformative retreats, and a connective caregiver-to-caregiver multilingual network.
- Universities: Local universities and colleges may offer low or no-cost counseling through graduate degree programs.
- Psychology Today: Magazine offering mental health information and an online therapist research tool.
No matter where you’re at in your rare disease diagnosis journey, know you’re not alone and your mental health and well-being matter.
