That time of year is upon us once again. With the seasons changing and the holidays just around the corner, there is a certain joy in the air for many. The closeness of family and friends often allows us all to get through these bone-chillingly cold months here in New England.
However, for those segments of the population that are challenged by a disease, the holiday season may not be joyous. For me, suffering from systemic mastocytosis (SM), the holidays can be demanding on many levels.
Oftentimes, chronic illnesses come with a variety of challenges that sufferers face daily. These may include pain, confusion, difficulties with simple tasks, walking, talking, breathing, and bathing. For SM specifically, there are some additional challenges. Due to the high risk of anaphylaxis, we must always be on elevated alert for triggers that cause these reactions. This adds a layer of difficulty to our celebrations as our triggers may be internal (consumption of certain foods or stress) or external (perfumes or temperature levels, or both).
In some cases, for patients with SM, the combination of pain, cognitive decline, loss of motor function, difficulty breathing, and a high risk of anaphylaxis can result in not being able to maintain gainful employment or any employment at all.
Read about experimental therapies for SM
These factors have altered the once-thrilling times of celebration by morphing them into just another stressor. One concern is how to afford to “keep up with the Joneses”—to feel socially adequate—when the bills are still piling up. Another concern, the largest for me, is that no one close to me remembers what triggers my allergic reactions. These include heavy perfumes, scented candles, sauces, and dips full of vinegar and citrus. With all of these factors, suddenly the warm comforts of holiday cheer are more like alarm bells and fear.
Undoubtedly, the change of season in New England equates to severe temperature changes. There are more days below freezing than not and the sun becomes a distant memory. With SM, the body is unable to process extreme temperature changes. Leaving a warm home to venture out into the cold weather is enough to spark a reaction. For some patients, this change is enough to bring on symptoms such as hives, shortness of breath, confusion, gastrointestinal distress . . . the list goes on.
The culmination of the above-mentioned trials and tribulations has chronic illness sufferers feeling misunderstood, withdrawn, and alone. This time of year can be beautifully cheerful for everyone, so long as we all remember to walk a mile in each other’s shoes. In relation to medical care teams, it is my urgent suggestion that an appointment is scheduled to screen your patients with a chronic illness before and after the holiday season for depression symptoms, as well as inquiring about what needs they may have during this time.
It may be helpful to have a plan in place for supportive services, including psychological care, especially if the patient is on medication for any mental health-related conditions.