People living with rare diseases may experience a wide variety of physical symptoms, but those are not the only burdens they carry. Pain, financial worries, social isolation and stigma also take a toll on mental health and emotional wellbeing. Deliberate choices by medical professionals can reduce that stress and help protect patient health.
Studies show that 80% of rare disease patients have reported emotional distress. When treatments have not been developed or are difficult to access, anxiety and depression can follow. Even for those with a certain diagnosis — which is difficult to obtain — complex care regimes and daily struggles with the medical system are part of the rare disease experience. Mental health outcomes aren’t truly separate from the underlying conditions, and they should be addressed comprehensively.
“In general, most people living with a rare disease that does not have a cure and is not widely known, struggle with anxiety and depression at some point in their lives,” said Parastoo Fazeli, MD, a board-certified rheumatologist. Patients and their stressors do not exist in isolation.
Families, loved ones and caregivers also often face higher levels of strain and mental health challenges as they navigate the emotional toll of rare disease. Unaddressed mental health needs in patients can damage family relationships and complicate treatment compliance.
Compassion Is a Clinical Tool
Emotional support and deliberate compassion should become a part of routine care. Patients experience stress living with rare conditions and ongoing medical concerns, and ensuring adequate access to mental health services is essential. Screenings and referrals for anxiety and depression should be provided to help identify patients who will need long-term support as early as the diagnostic phase.
Clinicians can also acquaint patients with wrap-around support and educational resources available to them, including the 988 Suicide & Crisis Lifeline for mental health emergencies. Caregivers and family members should also be encouraged to seek out emotional support as they cope with changes in their loved ones and daily routines.
“Physicians’ support goes a long way in easing the burden on patients who are already undergoing a strenuous journey,” said Leonard Calabrese, DO, a board-certified immunologist, rheumatologist and IgG4-RD specialist.
Mental health crises can happen to anyone, but they’re exceptionally common in patients facing life-altering conditions and rare diseases. Treating them cannot just be about managing symptoms and keeping people alive, but creating emotional conditions in which patients and their families can thrive.
