By Jill A. Ross
This blog post shares the perspectives of members of the North Central West Virginia Lyme Community (NCWVLC), a support group for Chronic Lyme Disease patients, about how living with a serious chronic illness has affected their ability to participate in the holidays and how overextending themselves during this busy season can adversely affect their health.
While many people anticipate the holidays with excitement, those suffering with chronic illnesses may approach the holiday season with anxiety and even dread. Because a chronic illness can make normal everyday life challenging, adding in the extra expectations and demands of the holidays can turn this joyous season into a difficult time that can result in poorer health and, in some cases, a full relapse of the disease or condition.
Chronic Lyme Disease patients suffer from a myriad of symptoms including fatigue, brain fog, memory issues, muscle and joint pain, insomnia, anxiety, depression, food allergies and sensitivities, as well as central nervous system issues such as Bell’s Palsy and muscle twitching. Symptoms may wax and wane and patients follow complex regimens of medications, supplements, alternative treatments and extreme self-care.
“The holidays add a new stress that you don’t have on a day-to-day basis,” says Robin M., a former financial/program analyst who has been living with Lyme Disease, Babesiosis, Bartonella and Mycoplasma — other tickborne illnesses — for more than 20 years. “And as a wife and mother, most of the work involved with the holidays falls in your lap.”
Robin has experienced all kinds of holidays since she became ill in 1999. From the Christmas she spent at home alone when she was on IV antibiotics and so ill she could only crawl, to the years she overextended herself by entertaining a house full of guests, she has learned that she must put her own health needs first.
“It’s not worth having a six-month recovery,” Robin acknowledges after relapsing multiple times after the holidays. She no longer offers to host the extended family, has scaled back on decorating, and is extremely cautious about traveling.
“It’s been my lifelong quest to stay in remission, and I will do everything I can to stay well,” she says. She adheres to a strict gluten-free and organic diet and avoids sugar and grains. “You have to make a choice not to relapse. You have to take care of yourself.”
Becky K., a small business owner, agrees. She has been dealing with Lyme Disease and Rocky Mountain Spotted Fever following a tick bite eight years ago.
“I have scaled back my holidays majorly,” says Becky. She no longer hosts parties for 30 to 40 friends and business associates. Gone also is baking 12 dozen cookies, putting up two Christmas trees, having decorations everywhere and marathon shopping.
“Once I’ve crossed the line and done too much, it’s too late” she says. “Then the Bells Palsy, fatigue and brain fog set in and can stay for three to four months.”
Becky has learned to listen to her body and take care of her own needs first. When she recently prepared to have her family visiting for Thanksgiving, she took time out for a massage the day before they arrived. She has also found that doing yoga and practicing tai chi can keep the muscle twitching and buzzing sensation in her body at bay.
Donna W.’s biggest holiday challenge is dealing with the sugary treats that abound at Christmastime. A retired training specialist who has been living with Lyme Disease for 26 years, Donna is careful to avoid sugar, white flour, dairy products and alcohol. Her challenge is making 120 to 380 cookies for her church and family members without being tempted to eat them.
“Sugar is very additive. It’s the same as drugs or alcohol, so the best strategy for me is to live clean and to stay off it,” says Donna. Some years she does better than others, but she lives in fear of getting ill again. “The idea of a relapse is terrifying.”
Dealing with family at the holidays can be another tricky issue for those with Chronic Lyme Disease. Family members often don’t understand the illness and navigating family gatherings can be challenging for the patient who feels misunderstood and the family members who don’t know how to respond.
Beth N., a retired U.S. Forest Service firefighter with Lyme Disease and Bartonella that went undiagnosed for 15 years, was too ill to make the trip from California to her home state of West Virginia.
“When I finally made it back East, my in-laws wondered why they had not seen me for three years. They thought I did not like them. They didn’t understand that I was sick,” says Beth. “Their only experience with Lyme Disease was knowing someone who had a tick bite and was fine after a short course of antibiotics.”
Because there are usually no outward signs that one is suffering from Lyme Disease, patients are often told that they “look great” even when they may be feeling poorly. Rather than trying to explain the struggles going on inside their bodies and brains, many patients will just smile and act like they are fine, which only further distances patients from their family and friends and adds to the misunderstanding of this complex and challenging illness.
“People think you’re OK because you look normal when in reality I’m spending all my energy trying to act like I’m OK,” notes Beth.
Despite the challenges they face, NCWVLC members have learned to prioritize their health and wellbeing during the holiday season and have embraced a simpler and easier approach to the season.
“I actually enjoy the holidays more now,” says Becky. “Illness teaches you that life is fragile. Now I am more mindful of people and my moments with them. I really enjoy it.”
We thank the members of the North Central West Virginia Lyme Community for allowing us to share their stories.
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