Free yourself and your loved ones from stigma
The reality of being diagnosed with a rare disease is complex, layered with the stress of difficult, often puzzling symptoms, an often long-delayed diagnosis, and uncertainty about treatment options – all of which exist in a bureaucratic web of healthcare and insurance systems. It can be incredibly frustrating, leaving you and your loved ones feeling overwhelmed, alone, and misunderstood.
Between these frustrations and the physical symptoms you experience, you may find it difficult to think about or address the impact on your mental health. Maybe you’re unwilling to talk to your doctor or seek support for your mental health, due to unfair stereotypes or beliefs.
This is stigma, and it can sometimes make someone feel embarrassed or ashamed, whether from the fear of being judged by others – or even yourself. However, stigma is not only unnecessary, it can be harmful.
It’s time to set aside stigma and rethink mental health support by focusing on the facts.
Fact: Mental health and physical health are connected.
It can be helpful to know that mental and physical health are closely intertwined. It’s not uncommon for mental health symptoms to occur with physical conditions, including in rare disease. It’s also not uncommon for doctors to overlook this important aspect of your health, but the fact remains that mental and physical health are closely connected.
Rare disease can also affect the brain, so symptoms such as depression and anxiety often go unrecognized, or are difficult to distinguish because they overlap with symptoms of rare disease. This overlap may happen due to the effects of illness on blood circulation and brain tissue, or because of the impact on shared neural pathways that affect pain, inflammation, mood, sleep, and other cognitive symptoms.
Research clearly demonstrates that physical conditions affect cognitive function and mental health.
Here are some examples in rare disease:
- Depression isn’t merely a condition that occurs alongside sickle cell disease, it is the result of disease and stress converging to impact brain function, inflammatory markers, and nitric oxide. Inflammation and nitric oxide appear to have an important part in the pathophysiology of both depression and SCD.
- In acromegaly, high levels of growth hormone and IGF-1 have been shown in imaging to alter brain tissue – damaging specific areas, as well as nerve fibers and their protective layers. These changes can impact processes and areas responsible for memory formation, decision-making, mood, and anxiety, often persisting even after hormone levels are controlled.
- Fabry disease often results in damage to blood vessels, micro strokes, and reduced blood flow. This affects cognitive skills such as attention and decision-making, as well as areas in the brain that control mood, anxiety, or behavior.
Even absent rare disease, there is a clear relationship between cardiovascular and metabolic diseases and depression – having depression increases the risk of these diseases, and having conditions such as heart disease and diabetes increases the risk of developing depression. This reciprocal relationship is driven by shared pathways related to inflammation, genetics, the gut microbiome, and brain structure.
Mental and physical health are connected.
Caring for your mental health is just as important as caring for your physical health.
Fact: Many rare disease patients are reluctant to seek additional treatment or support for mental health symptoms.
It often takes years to receive an accurate diagnosis in rare disease, as many people experience countless appointments and unproductive healthcare encounters that don’t validate their symptoms or what they’ve gone through. The stress of not being taken seriously, or repeatedly being sent from one specialist to another can take a toll.
Mental health professionals, and peer and group support can help you find resources, develop coping skills for more effectively managing symptoms of anxiety or depression, and ease the stress of managing a rare disease.
Seeking support can also be empowering. When you begin to develop daily and long-term strategies, you create better mental well-being, putting you back in control and helping you feel less overwhelmed.
There is no reason to suffer in silence. You’ve advocated for yourself all along, don’t stop advocating now.
Fact: Mental health support, whether peer or professional, can be geared towards health management goals.
Symptoms of depression, anxiety, or trauma can become a difficult cycle to break, but you have options for feeling better. Caring for your mental health improves your physical health and vice versa, and there are specific therapeutic approaches that can help you address particular goals and areas of health.
For example, Cognitive Behavioral Therapy (CBT) works to help recognize and improve thought patterns and incorporate action that leads to better outcomes. It can be applied to conditions like chronic pain (CBT-CP) and problems with sleep and insomnia (CBT-I). It can also be used to help address the stress and turmoil faced in rare disease, improve symptom management, self-esteem and confidence.
As another example, neuropsychology is a specialty that assesses cognitive skills such as memory, attention, planning and decision-making. Neuropsychologists can help develop treatment plans for managing cognitive symptoms as well as emotional support and therapy. They work closely with other healthcare professionals to identify solutions for better treatment of symptoms that impact daily life.
Mental health support can help you find strategies for a variety of other goals as well: improving marriage and family relationships, reducing isolation and increasing social connection, targeted nutrition and physical activity, and other lifestyle factors related to a specific diagnosis.
You may feel overwhelmed by the hectic schedule of treatments and appointments. It’s also true that managing the symptoms of rare diseases can be challenging, and constantly evolving. It can be difficult to think about finding mental health support, or even finding the time for yet another appointment. These reasons for hesitancy are certainly understandable.
However, mental health is fundamental to physical health, thus symptoms of depression or anxiety should not be ignored. Left untreated, these symptoms can further complicate health and create a cycle of hopelessness.
Fact: You’ve come this far.
Mental health support doesn’t mean seeking a perfect mind, it’s simply a tool you can use to manage symptoms and develop more effective strategies for coping with the effects of rare disease. You’ve been through so much already, and accepting the reality of rare disease, its uncertainty, and anxiety about the future can be difficult to live with. You deserve to have the support you need to rediscover your inner strength and feel better. It’s often a relief just to be heard by a peer or professional who understands.
Rethink mental health support. After all, empowerment in health is not about always having perfect control, it’s about doing what you can within your control, and learning to focus on what matters most.
