Mast cell disorders come with a variety of challenging and often confusing symptoms that affect multiple organ systems in your body. The uncertainty of what’s happening in your body and the difficulty of living with symptoms can affect your mental health.
Challenging symptoms of mast cell disorders
People with mast cell disease experience a broad range of symptoms that can be both frustrating and stressful.
The two main types of mast cell diseases are mastocytosis and mast cell activation syndrome (MCAS) Some people may experience more skin issues like a rash or lesions. Others may have severe stomach problems such as abdominal pain, nausea or diarrhea. Others with these diseases have severe physical symptoms that include shortness of breath, changes in blood pressure or heart rate, and muscle and bone pain.
Many people with mast cell disorders also live with frequent allergic reactions, including severe or life-threatening anaphylaxis.
Given the range of symptoms, people with mast cell diseases often go undiagnosed or face a delayed diagnosis for years. Research shows it takes people an average 6.5 years to get a mast cell disease diagnosis.
The time is spent undergoing testing and finding the right specialists — oftentimes a stressful, frustrating process.ching), or even exercise. It can cause the sudden, rapid release of mast cell mediators such as histamine.
Mental health symptoms of mast cell disease
Many people with mast cell disease develop psychological symptoms.
- Stress and anxiety. When your body reacts unpredictably to different triggers, it can make you feel anxious. You may constantly worry about having a reaction, especially when you are in new or public places. It may lead to anxiety disorders and affect your overall mood and sleep.
- Mood changes and lack of energy. The physical symptoms of pain combined with the risk of severe allergic reactions can affect how you feel about yourself. It can lead to mood swings, fatigue and lack of motivation.
- Depression. Dealing with constant symptoms or having to limit activities can make you feel sad or hopeless. Mast cell diseases can lead to feelings of isolation, especially if it’s hard for others to understand what you’re going through.
- Brain fog and cognitive issues. Some people with mast cell diseases develop “brain fog” as a symptom. They may have trouble focusing, remembering things, or thinking clearly. This can make school or work more difficult and frustrating.
More than half of people with mast cell disease say their condition is very stressful. And nearly a third of people have moderate anxiety and depression symptoms.
Coping with Mast Cell Disease
Living with a mast cell disease is difficult, but it is possible to maintain a healthier and happier life. Here’s how:
Stick to a routine. Having a routine can bring a sense of normalcy and reduce anxiety, especially if the unpredictability of mast cell disorders triggers stress. Take time each day to do something that brings you joy, like listening to music, reading, or spending time with loved ones. Make a list of things you enjoy or have always wanted to try. This is a great start to supporting your mental health.
Connect with your doctor. Partner with your doctor(s) to develop a treatment plan that considers your physical and mental health. This may include seeing specialists such as a primary care doctor, an allergist, dermatologist, or other specialists. It may also include seeing mental health specialists such as a psychiatrist or a psychologist. Before your appointment, write down questions you may have for the doctor. Ask about your treatment choices. Take back the power from this disease.
Medication and medical management. Work closely with your doctor to manage the physical symptoms of your mast cell disease. This can improve your mental health. When your symptoms are under control, it’s easier to focus on feeling better emotionally. Keeping your medications with you at all times could help ease any anxiety you may feel should a severe reaction occur.
Partner with a mental health professional. You may need someone to support your mental health so you can better manage anxiety, depression or stress. Ask your primary care doctor or specialist for a referral to a mental health specialist. A therapist can help you talk through your conditions and empower you with coping strategies. Biofeedback and cognitive behavioral therapy (CBT) can help you break negative thought patterns.
Find a support group. Living with mast cell diseases can feel isolating. You may feel like no one understands what you are living with on a daily basis. The Mast Cell Disease Society has a wealth of resources and can connect you with others through support groups. In chronic illness groups, you can share practical disease management tips and receive emotional support. Be careful of misinformation, though. Confirm advice you receive online and discuss it with your doctor.
Focus on your personal support system. Some studies have found that people with mast cell disease tend to avoid social interactions. Increasing social support can help lessen anxiety. Find ways to grow your support system. Join a gym. Take a class. Volunteer in your community. You can connect with groups of people who enjoy similar activities, such as arts and crafts, cooking or hiking.
Advocate for yourself. Help those around you understand your condition. When people know about your needs and triggers, they can offer better support.
Get moving. Regular physical activity releases chemicals called endorphins that can improve your physical and mental well-being. Try to do something active every day to move your body. Take your dog for a walk or hike. Go to an exercise class. Do an online yoga class.
Try meditation or deep breathing exercises. Meditation is a mental practice that can help people to better manage their stress. Mindfulness exercises can help you lower your anxiety and keep you moving forward on your disease management journey.
Eat a balanced, symptom-safe diet. You can never go wrong with a nutritious, balanced diet. Good nutrition can help your immune system. If certain foods trigger your mast cell disease symptoms, take steps to avoid them. Look for healthy allergy-friendly recipes.
Start a journal. Some people find that writing down their thoughts and feelings helps improve their mental health.
Set boundaries. Say “no” when necessary. It’s okay to limit activities that may trigger your symptoms or overwhelm you emotionally. If you’re feeling overwhelmed, taking short mental breaks can prevent burnout and help you recharge.
Reviewed by:
Jonathan J. Lyons, MD, is a board-certified allergist and immunologist and Professor of Medicine at the University of California, San Diego. He is the former chief of the Translational Allergic Immunopathology Unit in the Laboratory of Allergic Diseases at the National Institutes of Allergy and Infectious Diseases (NIAID). Dr. Lyons has received multiple awards for his groundbreaking work in characterizing genetic causes for increased mast cell hyperactivity and anaphylaxis, and first described hereditary alpha-tryptasemia.
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