Navigating a significant event with rheumatoid arthritis can indeed be quite challenging. Managing the pain and fatigue while coping with the unpredictable nature of this condition can feel overwhelming. Whether it’s a holiday like Halloween, Christmas, Thanksgiving, or my son’s birthday, each one demands a lot of energy, planning, pacing, and preparation for someone living with inflammatory arthritis. Living with a disease like rheumatoid arthritis (RA), which brings along fatigue and pain, can make these festive occasions seem like monumental tasks that disrupt your self-management routine.
Being a single mother can amplify the sense of overwhelm, given the added financial and time pressures. December, in particular, stands out as a significant and costly month for me, especially with my son’s birthday falling just two weeks before Christmas. There are times when I feel like I never have enough energy or funds to accomplish all that I wish to during this period. However, it’s important to recognize that these feelings may also be influenced by the portrayal of idealized holiday experiences in media and on social media platforms.
During the holiday season, I often take breaks from social media to protect my emotional well-being, as I’ve found that it can trigger past traumas associated with this time of year. In the past, I used to go all out with Christmas and other holidays. However, my diagnosis of rheumatoid arthritis has made me adopt a simpler approach. Though, admittedly, it’s not entirely by choice.
At times, I do experience moments of sadness because I would love to decorate, bake and cook everything, throw big parties, and attend all the Christmas festivities. Yet, the reality is that living with rheumatoid arthritis often makes this impossible or even necessary. I have to question whether they are even necessary and ask “Is it worth setting myself back?”
The Challenges of Celebrations with Rheumatoid Arthritis
Here are a few factors that make holiday or big events taxing when you have RA.
Fatigue is my absolute worst nightmare. Fatigue robs me of energy, especially during the holidays. I struggling to get things and I struggle after all the extra activities. Fatigue can get in the way of me enjoying holidays — I’m just too tired to enjoy it.
Managing a chronic illness is a full-time job. Symptoms don’t take a break because we need to get something done or because it is the holidays. All the prep and extra activities mean I might fall off my self-care routine, which is crucial when managing this disease.
Arthritis is the leading cause of disability in North America, and unfortunately, I’m part of that statistic. Disability pay falls below the poverty line and doesn’t keep up with the rising cost of living. Additionally, there are extra expenses that people with arthritis have to bear that those without health issues don’t have to worry about.
I considered going to a local craft market, but when I looked at pictures of it online, I saw a huge crowd of people, and just the thought of being in such a bustling place overwhelmed me. If I had gone in person, I’m certain I would have felt even more overwhelmed by the sheer number of people and the possibility of getting bumped into.
Honestly, I’m not a fan of large crowds, especially with my chronic pain and balance issues from my arthritis. Being in big crowds makes me uncomfortable, and I’m always concerned about the risk of germs in such settings.
Before my rheumatoid arthritis diagnosis, I didn’t mind large crowds as much, but things have changed. Now, I have to be more cautious about my weakened immune system, fatigue, and pain. This time of year is not only overwhelming due to the holidays but also because there’s a higher risk of respiratory infections spreading during this season.
All the rich foods, alcoholic beverages, sugary treats, events, late nights, and long lines can easily set off a flare-up for me.
But the holidays aren’t just a challenge physically; they also bring up a lot of unresolved trauma, which is common for many during this time of year. I know that each Christmas might push me further into depression, but being prepared in advance helps me handle and cope with it more effectively.
Living in the northern hemisphere, I’m prone to experiencing an increase in both my RA and depression during the holiday season. Moreover, the presence of snow covering the ground makes getting around even more difficult.
The winter months can be a challenging season for people living with RA. The cold weather tends to worsen joint pain, stiffness, and inflammation. Therefore, individuals with RA need to take extra precautions during the winter months to effectively manage their symptoms.
However, it’s not just the rise in pain or fatigue that significantly affects me. Seasonal depression, also known as seasonal affective disorder (SAD), is a psychological condition characterized by recurring depressive episodes that typically occur during specific seasons of the year, most commonly in the fall and winter. It is believed to be linked to reduced sunlight exposure during these seasons, which can disrupt the body’s internal clock and impact the production of certain hormones, such as serotonin.
Symptoms of seasonal depression may include low mood, decreased energy, changes in appetite, difficulty sleeping, and loss of interest in activities. All of these factors greatly impact my rheumatoid arthritis and make winter even more challenging. Recognizing these issues is my first step in addressing and managing them.
Access to care
My chronic illness doesn’t take a holiday, but the availability of care and support during this time of year often does. This can significantly impact my ability to receive the necessary care and attention to manage my condition.
Tips for Managing Rheumatoid Arthritis During the Holidays
There are strategies that can make the holiday festivities more manageable and enjoyable. Here are a few that work for me.
Pay attention costs
Take advantage of sales or deals whenever possible to reduce costs, even if only by a small amount.
Keep it simple
I only invite a few people over for celebrations, specifically those who I know will help with meal prep and cleanup. Stress from hosting individuals who don’t appreciate or who hold traditional gender roles in cooking and cleaning isn’t worth it.
To simplify further, I have groceries, gifts, decor, or whatever I need delivered to my house to conserve energy and reduce joint stress.
Be protective of your energy
Plan socializing and preparations during your peak hours. I always tell people that I turn into an “arthritic pumpkin” around 8 or 9 pm, so they should plan to leave by then. Clean as you go and include rest as if it were a step in the recipe.
Research the venue to ensure accessibility and appropriate accommodations for individuals with mobility challenges. Arrange for a wheelchair or mobility scooter rental if needed and familiarize yourself with the event’s layout and potential obstacles.
Focus on activities that bring the most joy to conserve energy and make the event enjoyable.
Be mindful of your symptoms
Keep ice packs on hand and a place to put your feet up when needed. Sit while preparing food, if possible. Slow down when symptoms approach.
Delegate the to-do list
Assign tasks to others to manage the physical strain and reduce pain. Clearly communicate instructions and expectations, and prioritize tasks based on your direct involvement.
Use assistive devices
Depending on the event, utilize assistive devices like braces, splints, or walking aids for added support, reducing joint stress and improving mobility.
During cooking, use electric kitchen tools like can openers or hand mixers to reduce joint pain. Make sure you can sit while cutting vegetables. Consider using oven bags for cooking turkey, as they eliminate the need for basting or flipping the bird.
Don’t forget self-care
Prioritize self-care before and after the event, including proper rest, stress management, and adhering to medication plans to minimize the impact of RA symptoms. However, remember to enjoy yourself as well!
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.