Learning you have systemic mastocytosis (SM) with a poor prognosis can be a life-changing moment. The diagnosis may have come after months or years of unexplained or worsening symptoms; when it turns out to be an advanced form of the disease, the news can feel overwhelming.
While there’s no easy way to face this kind of prognosis, there are strategies that can help you cope, find support and live your life meaningfully despite having a chronic disease.
Understand your prognosis and what your options are
SM can vary greatly in how it affects the body. In its more aggressive forms, the disease can involve the liver, spleen and other organs, leading to serious complications.
Learn more about SM treatment and care
Ask your healthcare team to explain what your specific prognosis means and what treatment options are available. Even when curative therapies are not possible, there may be treatments that ease your symptoms, reduce complications and improve your comfort. Clear communication with your doctors can help you make informed decisions and plan ahead.
Allow yourself to feel your emotions
A poor prognosis can be a shock and often brings with it a wide range of emotions, from fear to sadness to anger. It’s important to acknowledge these feelings rather than bottle them up inside.
There’s no “right” way to process the news. It might help to talk to a loved one or trusted friend about your feelings, write your thoughts and feeling down in a journal or work with a mental health counselor.
Seek support
A diagnosis like this can feel isolating, but remember that you are not alone. Lean on your support network of family and friends who can provide practical help and emotional comfort.
Patient organizations can also connect you with support groups, both in-person and online, where you can speak and share stories with others who understand what living with SM is like. Connecting with others who are facing similar challenges can lessen the sense of isolation and provide valuable tips for coping day to day.
Focus on quality of life
Remember that your SM diagnosis doesn’t define you. Even with a poor prognosis, there are ways to make the most of every day. That may mean spending more time with loved ones, pursuing hobbies or appreciating small joys.
Talk to your doctor about supportive care options that can help maintain comfort and stability, such as antihistamines, pain management or therapies for organ complications.
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