With chronic illness, we can’t brush off holiday stress so easily

Everyone experiences health limitations at some time or another, whether it’s an injury or something as simple as a cold or flu. However, many of us with rare diseases and other chronic illnesses have to regularly weigh the consequences of our symptoms against our well-being.

When I was young and hadn’t yet received any long-term diagnoses, I experienced repeated bouts of illness. When I became a mother, I lived in get-it-done mode and pushed through life, ignoring my body’s signals. I never really knew how to exist in my own body very well.

My gastrointestinal system has always been the weakest part of my body. As a teen, I was diagnosed with acute inflammatory gastritis. In adulthood, that changed to irritable bowel syndrome, and then I received a diagnosis of mast cell activation syndrome. Now I also have a diagnosis of hereditary angioedema (HAE). Stress can affect all of these, so ignoring my symptoms and pressing on only makes matters worse.

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Although I do experience other triggers with my HAE, stress is one of the biggest and most difficult to avoid and regulate. I really try to prevent negative stress, but it’s tough to avoid positive stressors, such as holidays and other celebrations. I love our family and friends, but sometimes socializing can take its toll on my physical condition.

When I had Lyme disease, I learned very quickly that health and well-being should never be taken for granted. I went from being a very organized stay-at-home mom who was always on the go and juggling lots of kids with school and extracurricular activities to being bedridden with limited mobility almost overnight. It became a two-year battle to regain some type of normalcy, and left me with a long-term, significantly compromised immune system, in addition to an acute awareness of my physical boundaries.

These days, I find that no matter where I am in my chronic health and rare disease journey, what symptoms I am experiencing, and how my body is or is not cooperating, I am still challenged. What makes life even more difficult is when I do take a step back and choose to refrain from overdoing it, and make that known, yet others don’t always understand or respect my decision.

Don’t get me wrong, I appreciate it that people still think of me as the fully capable and unstoppable go-getter I once was, but that certainly is not how I feel now. It’s hard when I can’t meet my own standards, much less those of others. The hardest part is coming to terms with having to say no when I can’t fulfill all of my loved ones’ expectations. It can become overwhelming at times and is particularly challenging during the holidays.

It’s taken me many years of learning to be in tune with my body, including unpacking my mental health, learning to speak up for myself, and setting both physical and emotional boundaries. I feel conflicted about sharing these things, especially with people who don’t understand. In a way, I’m happy they don’t fully comprehend what it’s like to live with health complications, although I wish they could respect my dilemma and trust that I, too, am dealing with the disappointment of having to make such difficult decisions.

How do I balance work, home, family, friends, community, and all the expectations that come with them, as well as those I place on myself? All of these come with their own challenges and varying degrees of stress, which then induce symptom flares.

I try to make time to exercise, eat healthily, build in downtime, and practice self-care each week. I also enjoy spending time outdoors in nature, studying special interests, and pursuing spiritual growth to ground and center myself. I attempt to pace myself, prioritize, and make wise choices for my health. I do believe that through it all, we can learn resilience.

I’m still coming to terms with the changes and challenges of living with my diagnoses, in addition to aging. I’ve learned that it is a journey and a process, not an event. In community, we are strong. Life with a rare disease is complicated. I have faith that we can and will get through it together.

May you find hope and joy this holiday season!

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.