Many patients struggle with feeling socially isolated because of the limitations systemic mastocytosis (SM) carries. The symptoms of SM can cause pain and discomfort that impact every part of daily life. Avoiding triggers can put even more limits on socializing, whether that means skipping the ant bites and hot sun of a picnic in the park or avoiding the drinks and perfume at the office holiday party. Thankfully, there’s steps patients can take to help make navigating social situations easier after an SM diagnosis.
How does SM affect social life?
In SM, the symptom burden can differ from person to person and vary from mild to severe. Despite the variation, many patients find that symptoms impact their daily lives—including time with family and friends. You may face some of the following challenges when living with SM:
- Feeling self-conscious about symptoms that are visible to others, such as skin flushing or hives
- Struggling with symptoms that are not visible, such as headache, fatigue, digestive issues, joint pain and brain fog
- Trying to avoid symptom triggers in a public place
- Finding it difficult to explain your disease, or not wanting to explain it to colleagues or acquaintances
- Having to cancel social or professional engagements at the last minute due to unexpected symptom flare-ups
- Feeling alone in managing the emotional impact of living with a rare, progressive disease
Read more about SM signs and symptoms
What are some ways of coping with these social limitations?
Once an SM diagnosis is confirmed, your health care team will provide medication and suggest changes to your diet and lifestyle to avoid triggers. These can activate mast cells and cause symptoms.
What is a mast cell?
Mast cells are specialized cells of the immune system that mediate inflammatory responses and allergic reactions. They are found in the body’s connective tissue.
Common recommendations include avoiding sudden changes in temperature, emotional or physical stress, skin friction, insect stings, certain foods and medications, pollens and perfumes. Avoiding these triggers can help stabilize your symptoms, which can mean more confidence in social settings.
Here are some tips for overcoming social limitations due to SM:
- Know the details. Plan ahead for social outings by collecting all information on the place, food, people, predicted temperature and potential allergens.
- Dress right. Wear natural fibers and always bring extra layers to help regulate your body temperature.
- Know your limits. Grow comfortable declining invitations if you are feeling tired and managing symptom flare-ups or if you feel the potential risk of encountering a symptom trigger is too high.
- Communicate clearly. Ask family and friends for their support in managing certain situations.
- Host at home. Invite people to your place, where you can control the environment and feel more at ease.
- Boost your overall health. Prioritize your well-being by eating a nutritious diet; engaging in regular, light physical activity; practicing meditation, mindfulness and deep breathing to manage stress and support your mental health; and getting enough quality sleep.
- Prepare for emergencies. Carry a bag with your medical information, medication, epinephrine pen, change of clothes and anything else you need to urgently respond to a symptom flare-up.
Sign up here to get the latest news, perspectives, and information about SM sent directly to your inbox. Registration is free and only takes a minute.
