How ISM can affect quality of life and mental health

Systemic mastocytosis is a group of disorders characterized by large numbers of abnormal mast cells. Mast cells are a type of white blood cell that play an essential part in the inflammatory response that protects the body against infections and injuries.

When a person has systemic mastocytosis, large numbers of mast cells accumulate in organs and tissues throughout the body. This can cause an outsized inflammatory response that damages healthy tissue. It also puts a person at risk for life-threatening allergic reactions.

Indolent systemic mastocytosis (ISM) is the most common type of systemic mastocytosis among adults. “Indolent” means that the disorder progresses slowly and is not considered aggressive. People with ISM are considered to have a normal life expectancy and do not experience the organ dysfunction seen with more advanced forms of systemic mastocytosis.

Despite its indolent nature, ISM can have a significant impact on a person’s quality of life and mental health.

ISM, quality of life, and mental health

Quality of life refers to your overall wellbeing, including your physical health, moods, emotions, relationships, stress level, and your ability to find enjoyment and meaning in the parts of your life that are important to you. It is a bit different for everyone.

ISM can affect quality of life for a number of reasons:

Symptoms

ISM may be the least severe type of systemic mastocytosis, but it still causes symptoms. These symptoms can include itching, skin flushing, diarrhea, nausea, abdominal pain, fatigue, and headaches. Symptoms can interfere with many aspects of everyday life, including work, socializing, and personal goals. Symptoms can also be unpredictable, which can make a person feel like they have little control over their own life.

Anaphylaxis

People with ISM are at risk for anaphylaxis, a life-threatening allergic reaction that makes it difficult to breathe and causes the body to go into shock. Preventing anaphylaxis often involves avoiding certain foods, environments, and activities. People must also cope with the possibility of anaphylaxis occurring in the future, which can contribute to anxiety and distress.

Medical care and cost

People with ISM will require more healthcare appointments as a result of the condition. They may need to work with multiple healthcare providers and take several medications. Healthcare can be time consuming. It can also be expensive.

Loneliness and isolation

Symptoms and the need to limit exposure to triggers may lead to a person spending more time alone and less time with friends and loved ones. Chronic conditions like ISM can also put a strain on relationships with partners, family, and friends. This can lead to feelings of isolation and loneliness, which are associated with poorer mental health.

Changes in cognition

Systemic mastocytosis is also associated with cognitive impairment, including changes in thinking, memory, mood, and behavior. Some research has found that ISM and other forms of systemic mastocytosis cause physical changes in the brain that may contribute to these symptoms. Other research has found that depression is prevalent among people with ISM.

Work with your healthcare provider

There is no cure for ISM, but the condition can be managed with treatment. Treatment for ISM focuses on steps to avoid anaphylaxis, taking steps to prepare for emergencies (such as carrying epinephrine autoinjectors and wearing a medical alert ID), and therapies to reduce symptoms.

In addition to therapies to manage the physical symptoms and potential complications of ISM, mental health and social support should be a focus of treatment. If ISM is affecting any aspect of your mental or emotional health, talk to your healthcare provider. If you are not sure how you are feeling, answering these questions may give you a better idea:

• How would you describe your overall quality of life?
• Do you feel that your relationships with your friends, loved ones, or partner has changed as a result of ISM?
• How often do you experience low moods, such as feeling sad, angry, defeated, irritable, restless, or frustrated?
• How often do you feel anxious or worried?
• How often do you feel stressed?
• How much time do you spend alone? How often do you feel lonely?
• Have your sleep habits changed?
• Do you have difficulty concentrating or completing tasks?
• Have you had to stop doing anything as a result of having ISM?
• What has ISM prevented you from doing?

It can help to write down your responses to questions like these, and to keep a journal of how you are feeling day to day.