If your husband or wife was recently diagnosed with systemic mastocytosis (SM), they may feel like they’re barely staying afloat in a flood of disease information, treatment decisions and fears about the future. The emotional and practical support you offer can be a lifeline — but many spouses don’t know where to start. Here are some of the areas where you can be of help.
Understanding a systemic mastocytosis diagnosis
An SM diagnosis often leads to mixed feelings: Your partner may feel relief at finally having an explanation for their symptoms and a clear treatment pathway, but also fear and uncertainty about living with a new, unfamiliar condition. Learning about mast cell disease and connecting with the right medical professionals and support networks will help both you and your spouse navigate the challenges ahead.
Read more about systemic mastocytosis FAQs
Ways to support your partner
Your role in supporting your spouse with SM will be multifaceted: Your spouse is likely facing both complex emotions and new daily needs. While your spouse’s specific needs will be unique to them, here are some places to start.
Providing emotional support and encouragement
Your spouse may be dealing with brain fog caused by SM, worries about the future, stress and confusion about a rare diagnosis — or all of the above. As their partner, this is where your help might be needed most.
- Listening: Whether your spouse wants to talk through treatment decisions or just needs to vent, simply being present with them and listening can be one of the most important ways to help. Ask them how they are doing, and encourage open conversations.
- Supporting mental health: Support and encouragement in accepting and living with SM are important in maintaining mental health. If your spouse would like, enlist the help of a mental health professional — for your partner, for both of you, or even for yourself.
- Facilitating social interaction: SM can be socially isolating, but you can play an important role in ensuring your spouse stays socially active. Help plan a symptom trigger-free afternoon with friends, invite family over for dinner or suggest a day trip with rest built in.
Helping avoid and ease symptoms
Adapting daily life to live more comfortably with SM involves a learning curve of understanding symptoms, their triggers and treatment.
- Avoiding symptom triggers: You can be pivotal in making sure your spouse avoids certain foods, medications, alcohol, changes in temperatures, emotional stress, physical exertion, pollen, pollution and insect bites that act as triggers for SM symptoms. Avoiding triggers can mean everything from packing a fan for your spouse on a warm day to checking restaurant menus for food triggers before making a reservation.
- Managing symptoms: When symptom flare-ups can’t be avoided, your support will be essential. Your support might look like helping your spouse find time for a nap when they’re feeling fatigued, planning and cooking meals within an elimination diet for digestive problems or adding entries to a daily symptom log.
- Preparing for emergencies: Always carry two doses of epinephrine in case of anaphylaxis (then call an ambulance for urgent follow up at the hospital). A spare dose of antihistamines will also be useful in case of symptom flare-ups.
Navigating treatment together
Your husband or wife will be navigating a new treatment plan — and its medications and their dosages may change as their care team learns what works for your spouse and what doesn’t.
- Managing medication: The regular administration of disease-specific therapies, antihistamines, corticosteroids and other prescribed medications is important for effectively managing symptoms. Ask your spouse what will help them manage their medications: Some spouses may appreciate reminders to take a pill, while others might want a hand picking up prescriptions from the pharmacy.
- Assisting with appointments: By being present at all appointments and medical tests such as scans, biopsies and genetic tests, you are essential to the continuity of care — and to your spouse feeling supported during these visits. Help your spouse describe symptoms, ask questions they may forget and take notes they can refer to later.
Your constant support is an invaluable contribution to your spouse’s physical and mental health. But remember to support your needs as well: While living with a rare disease is difficult, ongoing caregiving is, too. Take time for self-care, and reach out to family and friends for their help as you and your spouse learn to live with systemic mastocytosis.
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