Living with Rare Mast Cell Disorder

Living with systemic mastocytosis (SM) can be unpredictable, as symptoms often shift without warning. Symptoms may flare in response to stress, certain foods, temperature shifts, medications, or other triggers, making everyday life feel uncertain and exhausting.

We spoke with two mental health experts about practical strategies for coping with that unpredictability and advocating for yourself at work.

Triggers can look very different from person to person. For some people, it can take months or longer to identify the cause of a flare. Keeping a simple log of your symptoms, meals, stress levels, and activities can help you spot patterns over time.

Lori Bohn, PMHNP-BC, DC, a board-certified psychiatric-mental health nurse practitioner and medical director at Voyager Recovery Center, helps her clients create an action plan specific to their job and outlining what they’ll do if they start to have an episode at work. This plan includes identifying specific environmental triggers at work and adjusting your surroundings, building in short rest or reset breaks throughout the day, preparing safe snacks or meals in advance, planning how and when to step away if symptoms start to escalate, and deciding who you can notify or ask for help if you begin to feel unwell.

You can’t control when SM flares, but it may help to build small pockets of predictability into daily life, said Tiffany Petite, MSW, RCSW, CEO and co-founder of Virtuous Circle Counselling. Simple routines like having your morning coffee, stepping outside for fresh air, or checking in with someone you trust can help signal safety to the nervous system.

These anchors don’t have to be complicated. Simple routines like waking up at the same time each day or taking a brief daily walk can help your body feel more regulated. Petite also recommends building what she calls a “flare plan” for when symptoms spike. This plan can help create a more predictable routine during unpredictable moments by outlining who to contact and which responsibilities you can hand off while you recover.

Many people with chronic illnesses like SM struggle with the unpredictability of living with their condition. Not knowing when something will flare or how your body will respond can keep you in a constant state of alert, and that naturally fuels anxiety, she explained.

A mental health professional can help you build a toolkit of practical coping strategies, said Bohn. These tools can be especially helpful in public settings or while at work when you’re unable to step away, and may include: grounding techniques to help you feel more present in your body, breathing techniques to help you gain control of your stress response, and cognitive restructuring to help reduce the intensity of your stress response.

In the middle of coping with SM, it’s essential to consider what this development means in practice for the people most affected by it. For individuals living with SM, having a support system and a plan in place can make a significant difference in managing their symptoms and maintaining a sense of control over their lives. By working with mental health professionals and creating a personalized plan, individuals with SM can learn to manage their condition more effectively and reduce the anxiety and uncertainty that often accompany it.

Talking to your employer about SM can be challenging. Your needs may change from day to day, and you might not want to explain that to a manager or HR team, especially when you want them to know you’re reliable.

People with SM may benefit from the following accommodations: flexible start times on harder symptom days, the option to work from home when symptoms are high, short breaks during the workday to manage fatigue or anxiety, and a quieter workspace to reduce sensory stimulation.

When your body feels unreliable, it makes sense that your trust in it might fade. Many people with SM describe a constant sense of uncertainty, like they’re always bracing for the next flare, even on days when symptoms are minimal.

Petite works with her clients to help them move away from trying to control every possible outcome and toward learning to support themselves when things don’t go as planned. That shift often reduces anxiety more than trying to control the uncontrollable, she said.

One method therapists use to help rebuild that sense of trust is called cognitive restructuring. This refers to the process of identifying and challenging the automatic negative thoughts that can increase stress.

Bohn often pairs cognitive restructuring with mental preparation. We go through mentally preparing them for situations that may cause them great stress, so that when that situation arises, it does not feel as overwhelming, she said.

Knowing how to communicate your needs to your employer and having a flare-up plan can make work feel less intimidating and more manageable. You may also benefit from speaking to a mental health professional who can help you process the emotional impact of SM and build a set of coping tools that feel realistic for your life, such as learning about clear aligner prices to manage your health care costs.

We can’t always make unpredictable illnesses predictable, but we can help people feel more supported, more prepared, and far less alone, Petite said.