Clarity & Advocacy
Chronic illness calls for clarity and advocacy. Friends and family need clear communication in order to manage expectations. Patricia Fennell (MSW, LCSW-R) coaches patients on how to negotiate their needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness." Fennell advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also, tell her that standing tires you out — ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate."
Firm & Flexible Boundaries
No one understands your needs better than you. Pre-set boundaries are key in maintaining optimal health over the holidays. Having predetermined end times for hosted gatherings, as well as extra prep and post time built into your schedule for recovery can be helpful. Keeping departure time open ended at gatherings is a good idea, with a gentle way to excuse yourself when you're ready. The best boundary to feel comfortable with is simply, saying no when needed.
Ask For & Employ Help
When hosting, ask family or close friends to assist with cooking or other tasks that can be shared. "Asking in advance allows people to help gracefully." Order groceries or catering in advance and have it delivered. Hire extra support for pre and post clean-up. Prep as much as possible in advance and consider the use of disposable dishes and flatware when appropriate.
Gratitude & Giving
The holidays can be an excellent time to reflect on what you are most grateful for, and to focus on the spirit of giving. "Take toys to the Marine Toys-for-Tots Foundation, take food to homebound seniors through Meals on Wheels, or provide goods and services to those in need. It will boost your spirit and remind you what the holidays are about."
The numbers of people with chronic illness are growing, and that's not necessarily a bad thing, says Fennell. "People are living today with heart disease and cancers that were once considered terminal illnesses, not chronic illnesses." Next time you are at a holiday party, or anywhere, look around. Some of those healthy-looking people may have chronic illnesses too. The growing numbers also mean you're not alone.
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| Contributed by Jennifer Howard |
