By Doris François Dahdouh, Peer Support Moderator.

As we recognize Mental Health Awareness Month, I find myself thinking about how deeply emotions are woven into the human experience, especially within the Histiocytosis and rare disease community. Emotions are not weakness. They are part of what makes us human. We feel deeply because we are living deeply. And when you are navigating chronic illnesses, uncertainty, caregiving, medical trauma, and the day-to-day unpredictability of rare disease, those emotions can become incredibly heavy.

Yet so many people are still made to feel “too emotional,” “dramatic,” “crazy,” or “weak” when they express what they are going through. In reality, many people are carrying burdens others could never imagine. Struggles often shape resilience. They build compassion, perspective, endurance, and strength that cannot be taught otherwise. The truth is people who have faced adversity often develop a depth and resilience that allows them to navigate life differently.

As a mental health professional, I continue to see rising levels of stress, anxiety, trauma, depression, and emotional exhaustion. Stress has become one of the most significant underlying themes impacting both mental and physical health. And in rare disease communities, stress is not occasional. It is chronic.

For many individuals and families affected by Histiocytosis, there is rarely time to pause and process what is happening emotionally because survival mode takes over. Appointments, treatments, scans, insurance approvals, symptom tracking, responsibilities, and daily functioning become the priority. People often find themselves having to “hit the ground running,” leaving little room to sit with their emotions or acknowledge the emotional toll of it all.

Living with Histiocytosis or any rare disease can involve chronic pain and fatigue, mobility issues, changes to physical appearance, unpleasant tests and treatments, lack of information, and lack of disease awareness. According to Health Education England Genomics Education Programme, these ongoing challenges can increase the risk of depression, anxiety, and chronic stress for patients, caregivers, and families alike.

The Health Education England Genomics Education Programme explains that rare disease often brings both “macro” and “micro” uncertainties into everyday life. Macro uncertainties are the larger, often overwhelming life questions: What does this mean for life expectancy? Will I be able to maintain job security? How will I cope if symptoms worsen? What will the future look like? Can I have children, or should I? Alongside these are the micro uncertainties, the smaller but persistent stressors that quietly accumulate over time: Is this pain related to my symptoms? What emotions or side effects should I expect today? Will insurance cover this appointment or treatment? Will medical professionals believe me? Will my primary care doctor support my need for time off work? Will referrals, letters, or appointment confirmations arrive on time? While each question may seem minor on its own, together they create an ongoing emotional burden that many outside rare disease communities do not fully see or understand.

Unfortunately, many patients also experience something deeply painful that can feel like emotional manipulation: gaslighting. They are sometimes made to question their own experiences, symptoms, or reality, leading them to feel as though they are imagining things or that what they are going through is not as serious or real as it truly is. So many individuals within the Histiocytosis and rare disease community find themselves needing to “prove” that something is wrong. Many spend countless hours researching their own symptoms, educating providers, advocating for testing, or fighting for treatment approvals because their concerns are dismissed or minimized.

Yes, mental health challenges are increasing overall, and sometimes symptoms can be influenced by stress or emotional overwhelm. But that does not mean every symptom is “all in your head.” Many symptoms are real, visible, painful, and life-altering. Sometimes medical professionals simply do not have the answers…and it is okay not to know everything. What becomes harmful is when uncertainty is met with dismissal rather than compassion and curiosity.

When people feel unheard, unseen, or invalidated while still actively experiencing pain and symptoms, it creates another layer of trauma. The body continues carrying the stress while the mind struggles to find safety and reassurance. Over time, this can contribute to anxiety, depression, fear, hopelessness, isolation, and emotional exhaustion. Checking in emotionally does not make someone weak. Asking for support does not make someone incapable. Needing rest does not make someone lazy. Having emotional reactions to difficult circumstances is part of being human.

This Mental Health Awareness Month, I encourage all of us to give ourselves and one another a little more compassion. To pause long enough to acknowledge the emotional weight that rare disease carries. To listen more carefully. To validate experiences more openly. And to remind one another that no one should have to navigate this journey alone.

Connection, support, understanding, and safe spaces matter. Sometimes one conversation, one moment of being heard, or one person saying “I believe you” can make all the difference.