Living with MCAS involves physical, emotional, and psychological challenges due to the way the condition presents and the work that goes into managing its symptoms. The MCAS journey often begins with bewilderment and frustration as someone experiences a potential bevy of symptoms that mimic a variety of conditions. It is typically diagnosed after ruling out other possibilities, a lengthy process that may enhance uncertainty and anxiety.

It’s very normal to experience stress, frustration, and even anger or grief during this process. However, implementing positive coping strategies can help individuals overcome these challenges and approach a life with MCAS in a more vibrant manner. Because it doesn’t have a cure and treatments don’t always alleviate symptoms 100%, patients with MCAS often face an ever-evolving challenge in managing their disease. 

Drawing from his experience in working with MCAS patients, Dr. Bruce Hoffman provides some strategies for coping with the uncertainty and challenges that come with a diagnosis below. 

Partnering with Your Body

Physical self-awareness is an important tool in living well with MCAS. Mindful self-observation allows you to be aware of symptoms, including when they occur, when they are at their worst, and when they change.

Tracking your symptoms lets you identify critical changes that might indicate a need for change in treatment. For example, if you normally experience symptoms such as itchy eyes, hives, and wheezing, new symptoms such as headache or confusion might indicate you should see your doctor to ensure there isn’t something else going on. Once other concerns are ruled out, you can enfold those new symptoms into your MCAS differential diagnosis list and begin to treat them.

Identifying trends with your known symptoms can help you address issues proactively. If you notice that you experience more severe symptoms when you aren’t well rested, you might limit obligations to ensure you can get the necessary reset, for instance. 

Building a Support System

Because MCAS presents so many potential complexities, a team approach to managing it can be helpful. Dr. Bruce Hoffman believes that open communication with trusted loved ones about MCAS is critical to supporting higher chances of positive outcomes. When your friends and family understand your condition and the uncertain nature of your symptoms, they are often more understanding of any limitations this might create. They may also work alongside you to support lifestyle changes that enhance your ability to live life more vibrantly.

In some cases, patients may work with multiple healthcare professionals. Allergists and immunologists may lead the charge in diagnosing and managing MCAS, dermatologists may help treat skin-related symptoms, and gastroenterologists, cardiologists, and other specialists may become involved when it impacts relevant body systems or organs. It’s important to work with your provider network to facilitate communication and transfer of information so that your healthcare providers all have the information they need to make appropriate recommendations for treatment. 

Lifestyle as Medicine: Beyond Medication

Among the many tips for living with MCAS is learning to harness the power of lifestyle modifications to move beyond clinical treatment opportunities offered by medication alone. Some lifestyle solutions that can help in managing symptoms and improving overall well-being include:

  • Dietary adjustments. Reducing histamine intake via diet may help with MCAS symptoms, and keeping track of symptoms to understand what foods might trigger them can help patients create individualized dietary adjustments. Finding a way to eat an anti-inflammatory, low-histamine diet while reducing inflammation responses in the body is also helpful.
  • Stress reduction techniques. Stress is a main trigger for MCAS symptoms in many people, so reducing stress may reduce symptoms. Consider working on breathing exercises, reducing stress throughout life by simplifying your schedule and obligations, and finding hobbies that help you relax.
  • Gentle exercise. Some individuals with MCAS find that intense exercise triggers symptoms or makes them worse. If that’s the case, you don’t have to give up physical fitness altogether. Instead, work on integrating gentle movement and exercise into your routine. Options might include yoga, walking, and stretching. 

Empowerment Through Knowledge

When it comes to managing any chronic condition, knowledge is critical to patient success. Whether you’re new to an MCAS diagnosis or have been managing your condition for years, take time to educate yourself about MCAS and other relevant conditions. Read up on new treatment concepts and research so you know what ideas to bring up to your doctor, and don’t be afraid to advocate for yourself. It’s your body, and you know it best; communicate openly and honestly with your medical team about how you feel and what your goals are in management MCAS.

By empowering yourself with knowledge about MCAS, its symptoms, and ways you can manage your condition, you build resilience that will serve you well in the face of MCAS. While you may not be able to seek a cure, you can care for your overall health and seek a positive future.