Dealing with a rare disease can be mentally and physically draining. Follow these steps to alleviate long-term stress and maintain emotional well-being.
Living with a rare disease is not just a physical challenge — it takes an emotional toll on patients and caregivers. The lack of awareness, unpredictability of symptoms, limited treatment options, and uncertainty regarding the progression of the ailment contribute to heightened stress, anxiety and depression.
Let’s find out how one can take care of their mental health:
TOLL ON MENTAL HEALTH:
The psychological burden can be immense for individuals suffering from rare diseases such as Huntington’s disease, Gaucher disease, Ehlers-Danlos syndrome, Duchenne muscular dystrophy, and amyotrophic lateral sclerosis (ALS, among others.
“Feelings of isolation, frustration, and helplessness are common, as patients struggle with their declining health and its impact on their personal and professional lives. Many experience anxiety about their future, depression due to reduced quality of life, and grief over lost opportunities and independence.”
Caregivers, whether family members or professional aides, play a crucial role in supporting these patients. However, their own mental and emotional well-being is often overlooked.
“Unlike common illnesses, rare diseases often have no clear treatment path, leading to prolonged emotional and financial strain. In most cases, patients and their caregivers are more susceptible to mental health issues due to these challenges. Many caregivers experience guilt when they take time for themselves, believing they must always be available. However, this mindset can be detrimental in the long run.”
WHY SELF-CARE ISN’T SELFISH:
The importance of self-care for caregivers. “Self-care is not selfish — it’s essential. While caring for the patient is of utmost importance, caregivers must also prioritize looking after themselves. They should distribute responsibilities amongst the entire family to ensure shared support.
Express your emotions openly and carve out moments for enjoyment. Take a daily walk, practice pranayama, and share a laugh with good friends. Avoid the pressure of being a superhero. By rejuvenating your emotional and physical energy through brief moments of joy, you can prevent burnout and depression.”
Although caring for someone with a rare disease can be deeply overwhelming, it does not lead to mental exhaustion or depression. Through shared responsibilities and open communication, both the patient and their caregiver can navigate the challenges with resilience.
