Coping and support

Caring for a lifelong disorder such as systemic mastocytosis can be stressful and exhausting. Consider these strategies:

• Learn about the disorder. Learn as much as you can about systemic mastocytosis. Then you can make the best choices and be an advocate for yourself. Help your family members and friends understand the condition, the care needed and the safety precautions you need to take.
• Find a team of trusted professionals. You'll need to make important decisions about care. Medical centers with specialty teams can offer you information about systemic mastocytosis, as well as advice and support, and can help you manage care.
• Seek out other support. Talking to people who are dealing with similar challenges can provide you with information and emotional support. Ask your doctor about resources and support groups in your community. If you don't feel comfortable in a support group, your doctor may be able to put you in touch with someone who has dealt with systemic mastocytosis. Or you may be able to find a group or individual support online.
• Ask for help from family and friends. Ask for or accept help from family and friends when needed. Take time for your interests and activities. Counseling with a mental health professional may help with adjustment and coping.