Publication date: 4 Dec 2022
Everyone will face a health crisis in their lifetime. The crisis will likely be associated with emotional stress, anxiety and physical challenges. Poor mental health stemming from stressful medical situations is often not acknowledged or recognized. For rare disease patients and the people who support them, mentally taxing circumstances can be amplified by the prolonged nature of many rare disorders and the fact that the disease may be occurring when they are young or in the prime of life. The mental health toll can be profound and unrelenting, and should be considered as part of an overall treatment plan.
A key first step is understanding the disease at hand. This is not a simple proposition for rare diseases, as many conditions are yet to be characterized and obtaining a definitive diagnosis is not always possible. For such patients, convincing medical professionals and caregivers that the symptoms are not just in one’s head can be daunting. Following a science-based approach, where symptoms are evaluated objectively in context with genetic, environmental and medical history is important. For some, accessing government sponsored resources such as the Undiagnosed Disease Network (in the U.S.) can help find answers.
For patients with a diagnosis, understanding the cause, symptoms, prognosis and treatment options helps to establish realistic expectations for the road ahead. Knowing a genetic cause for a condition, for example, can remove self-guilt that the patient somehow brought about the disease. Having a disease with a name means that there are others who have experienced the same condition and may possess insights on effective treatments and coping strategies. Clinicians who are knowledgeable on disease progression can provide guidance towards better outcomes and finding suitable caregivers. Counseling or psychiatric help for patients or family members, if appropriate, should not be ignored for it can provide reassurance in combating disease-related stress.
Aside from medical issues, rare disease patients and families may need to confront social and economic issues that add to stress. Those with disabilities may face challenges in gaining acceptance in workplaces, social settings or at school. Building and maintaining an empathetic environment around individuals with rare diseases can be enormously beneficial. Economically, finding health care providers and insurers that will cover rare disease treatments remains an uphill battle for many. Access to therapies and support services for rare disorders is uneven across the globe. The lack of locally accessible specialized care undoubtedly creates a feeling of helplessness among countless rare disease families.
People are inherently social. We continually interact with and compare ourselves to others. This is how we come to define what is “normal” in our world, and in some cases, stigmatize what is different. Social communities have a role to play in broadening acceptance. For rare disease patients, social networks, disease advocacy groups, health care professionals and news media all play important roles in creating awareness, promoting engagement and providing inspiration to affected individuals. Ultimately, this breaks down barriers that isolate patients and cause them to suffer in silence. Their voices and those of their families and supporters must be heard. With the expansion of internet technology and social networks, finding mutual support and encouragement is becoming easier. Utilization of such networks can alleviate loneliness and hopelessness for patients and improve their mental health and outlook on life. RareShare is dedicated to promoting such support.
Assimilating advice from others, patients and families can find best practices for dealing with specific conditions. Being mindful of their environment, physical and mental state can lead to health benefits. Modest adjustments to diet, daily routines, leisure activities and sleep can improve the quality of life. Keeping engaged with family, friends and peers is an invaluable source of support. There are cherished shared moments of unexpected joy even amidst difficult circumstances.
Rare diseases often result in lifelong challenges. Patience, resilience and sustaining a positive outlook are needed to combat despair and hopelessness. Keeping a healthy mind can be just as important as addressing the physical symptoms in a balanced approach to dealing with rare diseases.