Those living with a rare disease such as systemic mastocytosis (SM) know that it affects all aspects of daily life, both personal and professional. It can be difficult to balance the burden of a rare disease with the responsibilities of working.
People living with SM often experience a heavy symptom burden, which may affect their ability to perform their job. It is important to communicate with your employer and ask for any necessary accommodations at work following your diagnosis and as your condition progresses.
Learn more about SM signs and symptoms
What is systemic mastocytosis?
Systemic mastocytosis (SM) is a rare white blood cell disorder that is found in both men and women aged 40 to 50 years. As no cure has yet been found, treatment is focused on avoiding symptom triggers and managing symptoms when they occur through medication, diet and lifestyle.
The symptoms of SM can range from hives, skin irritations and flushing, abdominal pain and gastric problems, mood changes, depression, fatigue, headaches and joint pain to anaphylaxis in severe cases. These symptoms are triggered by factors such as alcohol, spicy food, certain medication, sudden changes in temperature, physical or emotional exertion, insect stings and stress.
People living with SM need to stay vigilant to avoid the onset of symptoms, but symptoms can still occur without triggers.
Deciding to inform your employer
According to the Americans with Disability Act (ADA), it is a legal requirement for employers to reasonably accommodate an employee with a disability. This includes rare diseases that lead to a physical or mental impairment that substantially limits a major life activity.
However, there is some debate as to how much information you should divulge to your employer about your condition. While some say that it is better to be transparent as soon as you receive your diagnosis, others recommend being less forthcoming.
Still, if SM is affecting your ability to do your job, it’s best inform your employer. This will clear the way for them to provide support and find a way to adjust your hours or your responsibilities to accommodate your condition.
Ultimately, every case is different, and only you can decide the best way to manage your health in the workplace.
Asking for accommodations
Continuing to work is an important part of maintaining a certain level of normalcy in life following diagnosis. It has also been found to be beneficial for health status, for financial and social status and overall quality of life. Instead of leaving your job, it may be best to find a way to accommodate your disease at work while still protecting your physical and mental health.
The best way to inform your employer of your diagnosis and request accommodations is to go through your human resources department or representative. Make sure you explain your limitations to the degree you are comfortable and how it affects your ability to perform your job.
If you decide to have this conversation in-person, make sure you follow-up with an email about what was discussed, as it’s best to have all communication and decisions on accommodations in writing to be referenced later. You may want to come prepared for this discussion, whether over email or in-person, with a letter from your doctor that affirms the reason for your accommodations request.
It is recommended to be specific about what you need in terms of accommodation. It is also worth reminding your employer that this accommodation will make you more productive and support your overall well-being.
