Emotional Challenges Following an ALS Diagnosis
Receiving a diagnosis of amyotrophic lateral sclerosis (ALS) is extremely psychologically challenging for both the patient and their family members. Typically, it can take a year or longer of multiple medical visits to specialists before an ALS neurologist is able to confirm the diagnosis. By this time, patients and their families are already emotionally exhausted, frustrated, and frequently angry at the lack of answers regarding a progressing medical condition.
When the diagnosis of ALS is provided, the reaction is often shock, disbelief, and profound grief. Patients and families describe feeling overwhelmed, confused, and fearful. While individual reactions vary, overall, a sense of lack of control and hopelessness are common responses to receiving the diagnosis. These feelings can last for several months. It is important for patients and families to understand that this is a normal and expected response. Reaching out to their ALS team, as well as establishing care with a mental health provider, can help support the challenges people experience following the diagnosis.
Where to Start
ALS is a chronic medical condition and one that requires constant adjustment and flexibility to changing physical and emotional needs. Additionally, patients are confronted with numerous decisions and tasks. These include disability; financial and long-term care planning; how and when to share the diagnosis with family, friends, coworkers, and community members; as well as deciding if they should continue working.
Patients and families often describe feeling isolated as they try to manage and make decisions going forward. It is not uncommon to feel paralyzed and overwhelmed, not knowing who to ask or where to begin in managing these decisions.
Reaching out to your clinic social worker is a good place to start, as the social worker will help in prioritizing and strategizing for making these decisions. Your social worker can also provide information and resources to help and support you and your family.
Coping with Depression and Anxiety
Depression and anxiety are ongoing challenges for many living with ALS, as well as their caregivers and family members. Symptoms of depression can include feelings of sadness and hopelessness, loss of appetite, loss of motivation, isolation, sleep disturbances, and thoughts of not wishing to live. These symptoms are treatable, both medically and through talk therapy.
Similarly, anxiety, which is very common following diagnosis, arises from feelings like loss of control, dependence on others, uncertainty about the future, worry over new symptoms, financial concerns, and disease progression. When anxiety feels unmanageable and overwhelming, it is crucial to be honest with your ALS medical providers about how you are feeling. There is care, support, and treatment available for both depression and anxiety. Experiencing these emotions is normal and treatable.
Addressing Social Isolation
Social isolation is reported by most patients and families living with ALS. Changes in physical abilities make it harder to participate in social activities and often lead to people leaving their homes less and less over time. Challenges with speech and eating can be socially isolating for people, as our social and recreational activities often include meals and conversation.
ALS requires ongoing adaptation and finding ways to participate in the activities that have provided enjoyment and meaning prior to diagnosis. Clinic team members like the physical therapist (PT), occupational therapist (OT), and social worker can be helpful in suggesting ways to continue to participate in enjoyable and meaningful activities throughout your ALS journey.
Emotional support for patients and families is very beneficial in maintaining quality of life from diagnosis onward. Support comes in a variety of forms, like having close friends and family to talk to, receiving counseling services provided by a mental health professional, attending support groups, and having peer “buddies” who can share their common experiences with you. In addition, a palliative care team can manage symptoms as well as provide emotional support.