By Dana Hall, LCPC, MA, TF-CBT
Chronic illness is woven into the fabric of our lives, and the holidays are no exception. They are often a poignant reminder that we must prioritize our wellness. Living with chronic pain and the worry of navigating holiday expectations is not new to us, but the additional challenges that COVID-19 has presented are unprecedented. Let’s look at some ways you can participate in festivities with friends and loved ones while managing your pain and your health at the same time.
Did you know, the longer we have been coping with chronic illness, the less likely we are to talk about it? Feeling unheard, or feeling as though they will bring down the mood of others, are two common reasons my clients cite for why they have stopped communicating their needs. Throughout the year, we fight for our health, daily, in ways most others dear to us may never understand. Without a moment’s notice, we can find ourselves navigating between, “I need to not let this control my life” and “I need to stop and listen to my body.” Not setting boundaries or communicating our needs can have devastating impacts on our ability to engage during the holiday season. After all, this is often a time where we save up our spoons to be as present as possible.
“I’m sorry, I can’t.” The first few years after my diagnosis, I found myself apologizing a lot. Perhaps the most profound piece of self-care I came to learn was in the form of those two letters, N-O. Setting boundaries around our mental, emotional, and physical resources is not easy. We often find ourselves swimming in guilt, shame, and blame. This is amplified around the holidays when there can be so many invitations, events, and traditions to consider. However, we can learn to navigate these waters more effectively by owning that we have the right to prioritize our health. We know extending ourselves will inevitably lead to a wave crashing into us, sending us into a flare-up. Why, then, do we struggle with saying no? Often, it is because we fear hurting other people’s feelings. Yet, especially taking COVID-19 precautions into account, the reality is that we may have to decline some invitations. It is imperative to remember that other people’s opinions, emotions, and behaviors are not our responsibility. We have the free will to do what is in the best interest of our health and wellness.
“Here’s an article that speaks to my condition.” Provide friends and family with the opportunity to learn about your condition and share strategies as to how you maintain your health. For instance, the Spondylitis Association of America’s informative website and Patient Educational Seminar presentations are a great way to learn more about SpA. These resources may be helpful tools to send to friends and family, as they cover a range of SpA topics from physical symptoms to the disease’s biopsychosocial impact. Sharing information can be helpful in creating more congruent expectations throughout the year; however, we cannot force loved ones to educate themselves. We also cannot back down from doing what is necessary for our coping, regardless of whether or not they understand why it is important to us. This includes being upfront regarding your comfort level with social gatherings, face coverings, and social distancing.
When we refuse to acknowledge our pain, we create an impossible standard. We need to work toward radically acknowledging that it is OK not to be OK. When you are surrounded by friends and family that do not have a chronic condition, it can easily make you doubt yourself. It is imperative that you stay active in your support network. To locate a support group, check out spondylitis.org/groups, and for more ways to interact try spondylitis.org/community. It can be extremely validating to hear others express that they, too, must prepare before an event and plan recuperation after an event. These kinds of first-hand shares help us connect with others who can support, advise, and encourage us on our wellness journey.
“What is truly important?” The pandemic has made us rethink our relationships with people, places, and things. In a time when we are required to take care when socializing, we can examine that which we hold close as we find new ways to connect. Step back and ask yourself what it is that you find most meaningful about your holiday traditions. It is often the shared love, joy, curiosity, bonding, and hope that draws our hearts together. Though things may look different, open yourself up to the possibility of reinventing new traditions such as writing meaningful letters to family, virtual get-togethers, and creating a family blog or group where you can share gratitude lists, recipes, songs, art, etc. No, it is not the same. It is not meant to be. However, we must practice a tool that we are familiar with when it comes to our condition—radical acceptance. Radical acceptance is a distress tolerance skill. It is not approval, but rather completely and totally accepting with our mind, body, and spirit that we cannot currently change the present facts, even if we do not like them.
While pain is a part of life, radical acceptance allows us to keep that pain from becoming suffering. By accepting the facts of reality, and not responding by shutting down or refusing to engage in life, we move towards: It is what it is. This does not mean we roll over and become helpless; rather, we acknowledge that denying the facts of reality will not change the facts, but will instead keep us stuck in thoughts such as “this is unfair,” “why me?” and “why now?” By choosing to radically accept the things that are out of our control, we prevent ourselves from becoming stuck in unhappiness, bitterness, anger, and sadness, and we can stop suffering.
“I can do hard things.” COVID-19 is here and it is concerning, but no matter how unfair it is, no matter what plans have had to change, we cannot change the fact that it is here and it is impacting our lives. This holds true for our illness as well. Setting boundaries, practicing radical acceptance, and focusing on what is important switches our focus to what we can control versus what we cannot, and this can be liberating. It frees up all the energy we were using to fight reality and helps us use it to focus on how we can effectively cope with the situation at hand—and take care of ourselves in the process.
Dana Hall received her BA in psychology, and her graduate degree in community agency counseling from Saint Xavier University in Chicago, IL. She has been a licensed clinical professional counselor for over 15 years in the state of Illinois. As a private practice therapist, she specializes in chronic illness management, trauma, and relational issues. She holds advanced training and certification in the following areas: Certified Clinical Trauma Professional (CCTP-II), Certified Clinical Anxiety Treatment Professional (ICATP), Certified Family Trauma Specialist (IATP), and an Addictions-Informed Professional (CAIMHP-Certification). She is a member of the American Counseling Association.