From learning to avoid symptom triggers, managing symptom flares and adapting to medications, a diagnosis of systemic mastocytosis (SM) can impact all aspects of your life, including your career. At work, symptoms can affect your ability to perform — but there are accommodations you can request and changes you can make to reduce the impact.
How SM can affect your work
The symptom burden of SM can affect your capacity at work by reducing your well-being, physical stamina and concentration. Flare-ups can trigger the following symptoms:
- Itchy skin rash, hives.
- Fatigue.
- Headaches.
- Heart palpitations.
- Brain fog and memory problems.
- Abdominal pain, nausea and vomiting.
- Joint or bone pain.
- Depression and anxiety.
The combination of any of these symptoms can also lead to poor sleep quality and insomnia, adding pressure to your ability to focus at work. On top of that, living with a chronic disease like SM can be exhausting, and as a result impact your mental health and social interactions.
Self-awareness — both of your triggers and how your symptoms affect your work — is key to managing SM’s impact on your career.
Read more about SM resources
Learning to balance your career and SM
Part of living with chronic illness is finding ways to adjust daily life in order to maintain previously “normal” activities and routines.
You’re not obliged to declare your SM diagnosis at work, but it can make it easier to explain your need to avoid certain SM symptom triggers in the workplace. In an office environment, these could include stress, sudden changes in temperature, dust, fragrances, pollens or chemicals and certain foods.
Here are some options to consider when managing a chronic illness like SM in the workplace:
Flexible working hours: In addition to making it easier to take breaks, a flexible schedule lets you avoid peak travel times and work when you’re most productive.
Working remotely: Working from home can allow you to better manage your exposure to symptom triggers by staying in an environment you control. It also means you avoid the added pressure of a commute.
Working part-time: Working fewer hours ensures you have time for medical appointments and to prioritize your health and well-being.
Modified responsibilities: Having less-urgent tasks, fewer physical tasks or fewer tasks in general can relieve stress and pressure.
Adapted work environment: From asking coworkers not to wear perfume to keeping the temperature cool, even small changes can help protect you from symptom triggers.
Leaving the workforce
In some cases, as SM progresses, maintaining your career may be unsustainable.
The age of SM diagnosis can vary, but the average age is around 55 years. In most cases, people diagnosed with SM are in the mid to later stages of their careers, and the thought of letting go of their professional lives can be difficult to accept.
If maintaining your career becomes unrealistic, you can apply for Social Security Disability Insurance (SSDI) if you have experienced SM symptoms for at least 12 months. Consult your doctor on how best to prepare your application.
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