Health-related anxiety is common in people living with rare and chronic diseases, making it more difficult to manage the symptoms and their effect on daily life.
In systemic mastocytosis (SM), specifically, symptoms can heavily impact quality of life. Managing symptoms and avoiding triggers require strict lifestyle and diet modifications. People living with systemic mastocytosis are faced with physical limitations and psychological challenges that can lead to feelings of social isolation and depression.
What is systemic mastocytosis?
A diagnosis of SM means managing a high symptom burden that may include skin irritation, hives and face flushing; gastrointestinal problems with nausea, vomiting, abdominal pain and diarrhea; muscle and joint pain; mood changes and depression, with anaphylaxis as the worst case scenario.
SM is a rare white blood cell disorder that is often diagnosed later in life in adults aged 40 to 50 years. In some cases, the disease progresses to other variants of SM such as aggressive SM, which may include internal organ failure and more severe health consequences.
Learn more about SM signs and symptoms
The effect of a rare disease on everyday life
Living with a rare disease is a burden that can impact mental health and overall well-being, as well as physical health. It is stressful to manage medication and symptoms, as well as the anxiety of the potential onset of symptoms. In people with SM, symptom episodes can be triggered by events such as friction on the skin, changes in temperature, alcohol, spicy foods, some medications, stress, physical exertion.
According to a survey, 85% of people living with a rare disease feel that it impacts on the physical and mental health, as well as everyday life. They also have higher rates of depression and feeling unhappy. They reported that the most common stressors include long diagnostic journeys, limited treatment options, limited work opportunities, interrupted periods of education/work and social stigma.
Managing health-related anxiety
In SM stress and anxiety can contribute to triggering symptoms, so it is important to manage mental health and well-being as part of the treatment journey.
Improving mental health that is suffering from the impact of a rare disease can include a combination of options, including therapy, support groups, medication, meditation and self-care. The exact dose or mix of these activities will need to be tailored to each individual case.
If you’ve tried several methods to relieve your anxiety and have been unsuccessful, you may want to speak with your doctor about alternative options.
Stronger, more resilient mental health plays an important role in effectively managing a rare disease, and in SM, it can help reduce the risk of triggering symptom episodes.
