Navigating a chronic illness during the holidays
As a doctor, I am constantly advising my patients to prioritize their own mental and physical health. Get adequate sleep. Eat healthy. Learn how to say no so you don’t collapse from exhaustion. Love and care for yourself like you do others.
I talk the talk but don’t always walk the walk — even though I know, both intellectually and physically, that self-care is critical to my well-being. When I am run down, my MS symptoms cry out for attention: left leg weakness and numbness, subtle vertigo, a distinct buzzing in my brain like a relentless mosquito that won’t go away no matter how many times I twitch and shake my head. I have become frighteningly good at ignoring these symptoms, boxing them up and pushing them away. Often, I can muscle through; other times it just hurts.
Recently, a friend challenged me to think about my relationship with my illness, to describe MS as a character in my story. This was a useful exercise. I conjured up an image of a stern teacher. She is frighteningly blunt and lets me know, loud and clear, when I disappoint her. She can be mean and scary, and I don’t really like her. But I must admit she is usually right. Still, I often defiantly dismiss her, even when part of me knows this is not in my best interest.
This holiday season, I wanted to do better. I needed to do better. So, as Thanksgiving approached, as I prepared to host 16 family members, many for multiple days, I paused to ask myself, What does MS have to teach me about self-care? I don’t like having this disease, but I do. I can’t change my reality, so I might as well benefit from the lessons MS is forcing on me. I believe they are relevant to all of us, whether we live with chronic illness or not, so I’ll share them here.
The first steps: Listen and observe
When my MS symptoms flare, it’s a message that I am tired, overextended, and stressed. I need to rest. I don’t always listen right away, but eventually I am forced to, and when I listen, I feel better. All of us can benefit from slowing down and tuning in to our physical selves. What sensations are you experiencing in your body, and what does this tell you about your underlying feelings and state of mind? Yes, we should heed our thoughts, but tuning in to our bodies takes us deeper, to feelings that might be hidden, secrets we might not want to acknowledge, a physical truth. If you don’t have a chronic illness, the messages might be more subtle — a vague tightness in your chest, a quick catch in your breath, a barely noticeable tremor in your hands — but they exist, and they signal stress.
The science is clear: the body’s stress response — though potentially lifesaving in a true emergency, when “fight or flight” is essential to survival — can be toxic in our everyday lives. Stress triggers our sympathetic nervous system to kick into overdrive in response to a perceived threat, releasing hormones such as cortisol and inflammatory molecules that, when produced in excess, fuel disease. Conversely, we know that pausing to take notice and interrupting this negative cycle of stress is beneficial. It can be as simple as breathing deeply and counting to 10. Our bodies know what’s up and let us know when we need to take care of ourselves. We must pay attention.
You are not responsible for everyone and everything
The holidays, essentially from mid-November through the end of the year, are a stress test we create for ourselves. The land mines are everywhere: more food, more drinking, more family dynamics, more unfamiliar (or overly familiar) surroundings. Personally, with my overinflated sense of responsibility, I experience a kind of dizzying performance anxiety every holiday season. I believe it is my job to make sure everyone present has a positive experience. For better or worse, I am someone who notices and feels the personal and interpersonal dynamics in a room. I sense and absorb even the most subtle discomfort, frustration, anger, shame, and insecurity, alongside the more upbeat emotions. Importantly, I also I feel the need to step in and make things better, to prop everyone up. It’s exhausting. But MS reminds me of how absurd, and even egotistical, this is. In truth, I can’t possibly care for everyone. Neither can you.
It helps to check our automatic thoughts. More than once on Thanksgiving Day, as the busy kitchen buzzed with activity and conversation, I intentionally stepped back and watched, reminding myself that I didn’t have to hold the whole thing up. Even though I inevitably slipped back into hyper-responsibility mode, these moments of self-awareness impacted my behavior and the dynamic in the room.
It’s okay to say what you need
To take full responsibility for my own well-being, I need to speak honestly and act with integrity. This means asking for what I need, clearly and without apology. Historically, I have been terrible at this in my personal life, burying my own needs in the name of taking care of everyone else’s, even rejecting clear offers of help. “I’m good, I’ve got it,” I might say, while simultaneously feeling bitter and resentful for having to do it all myself. This lack of clarity isn’t fair to anyone. MS reminds me that I need to do better.
This year, when my guests asked me what they could bring, I took them at their word and made specific requests instead of assuring everyone that I had it covered. When my mother started banging around in the kitchen at 7 a.m. with her endearing but chaotic energy, asking for this and that pot and kitchen utensil so she could start cooking, I told her I needed to sit down and have a cup of coffee first. She would need to wait or find things herself. She was okay with that. Family dynamics can be entrenched and hard to change, but clear communication can set new ways of being into motion, one baby step at a time.
I still have a lot to learn, but I am making stuttering progress, learning to listen to my body and honor my needs while also caring for those I love, or at least trying. Undeniably, I experienced some post-Thanksgiving fatigue, exacerbated by my daughter’s early-morning hockey game the next day, requiring a 4:30 a.m. departure. I felt it in my body — the familiar leg weakness, vertigo, and brain cobwebs — and, completely uncharacteristically, I took a nap.