Optimizing Life with Lyme
You can create an enriching life that includes Lyme disease—but isn’t defined by it.
Creating a new normal
Sometimes, symptoms associated with Lyme disease interfere with day-to-day life. Perhaps you’re able to carry on, but not as easily or in the same way that you once did. Or maybe you’ve been forced to cut back on work or school, you’re unable to fulfill your usual role at home, or you have trouble participating in your favorite activities. Your illness may have started to define how you see yourself, or how others see you. To varying degrees, your current life looks very different from your pre-Lyme life.
When you’re not feeling well, it can be natural to focus on all that you can’t do, rather than what you can. A hard-won lesson from the COVID-19 pandemic is that sometimes creating a new normal is necessary and even helpful.
You can define what life with illness looks like. As physician and multiple sclerosis patient Annie Brewster, MD, writes in The Healing Power of Storytelling: Using Personal Narratives to Navigate Illness, Trauma, and Loss, “When you feel like you have some control over your own story, it can help you adjust to a new normal and move forward with a sense of hope rather than defeat.”
Reframe your thinking
Part of creating a new normal is accepting Lyme disease as a part of your life right now. This doesn’t mean giving up or giving in to illness. It means that you’re accepting Lyme disease as part of your current normal, which will probably evolve over time. As Dr. Brewster writes, “Embracing your illness as part of your story is essential if you are going to begin to heal and move forward.”
Here are a few relatively simple steps you can take to help reframe your thinking:
Reframe negative thoughts. Instead of “I can’t play basketball with my kids,” think “I can play a board game with my kids, which still allows me to spend quality time with them.” Practice shifting your thoughts over and over, until it feels natural to do so. Positive thoughts lead to positive feelings, whereas negative thoughts lead to negative feelings. This doesn’t mean that your illness is all in your head or that you can solve Lyme disease with a mind-over-matter approach. It means that how you think and what you focus on can have a positive impact on your recovery.
Focus on what is in your control. You might not be able to control how you physically feel on a given day, but you can control how you think and feel about your life. You can also control certain lifestyle changes that might give you a better quality of life (see Making accommodations and adjustments). There is evidence that making any successful change contributes to feelings of self-confidence and control, which can improve your health.
If you’re having difficulty adjusting to your new normal, or need some help reframing your thinking, consider working with a therapist who is familiar with the impact of long-haul illness.
It’s okay to grieve what illness has taken from you. It’s natural to be frustrated, sad, or angry. You might feel like Lyme disease has robbed you of life as you envisioned it, and you might be uncertain about your future.
Grieving losses, be they of lifestyle, livelihood, independence, or self-esteem, can help you cope with and come to terms with the ways illness has impacted your life. You might circle through different stages of grief: shock, denial, anger, bargaining, depression, and acceptance. A therapist can help you through this grieving process.
Allowing yourself time and space to mourn losses and experience feelings associated with them will ultimately make it easier for you to think about creating a different but meaningful life that includes Lyme disease. As physician and multiple sclerosis patient Annie Brewster, MD, writes in The Healing Power of Storytelling: Using Personal Narratives to Navigate Illness, Trauma, and Loss, “While illness and trauma are never welcomed, this kind of major life disruption can kick us into action and motivate change.”
Making accommodations and adjustments
Though we may not realize it, we choose to make adjustments in our everyday lives even when we are feeling well. You might have a light dinner after an indulgent lunch, for example, or go to bed early if you were up late the previous night. Making lifestyle changes is one way to feel as good as possible in your new normal.
With Lyme disease, pushing yourself too hard can make you feel worse. Be realistic about your current needs, and consider what adjustments and accommodations would help make life easier and more comfortable for you. For example:
If you are experiencing brain fog or other neurological symptoms, you may need to schedule time away from screens.
If fatigue is preventing you from getting through the workday, you may need to consider a flexible work schedule.
If your energy crashes every afternoon, you may need to build in time for a nap.
Thinking about your values and priorities can also help you determine what changes to make. If you really miss going out to dinner with friends, consider that the value is in spending time with them, not the specific activity you engage in together. Consider less taxing ways to spend time together, like having a friend bring over some takeout.
An occupational therapist can provide recommendations for modifying activities and adapting the environment to help you more easily perform day-to-day tasks and activities at home, work, school, or in the community. (For more information, see Managing Symptoms).
You can also talk to family and friends to see how they might be able to help. If, for example, you find that you do need time to rest each afternoon, see if a friend, relative, or neighborhood teen might watch your kids for a couple of hours a day.
Seeking help for things you once did on your own may be an adjustment itself. Remember that while it may be difficult to accept help, you’re doing it in service of your current needs and ongoing recovery. If you feel like a burden for relying on others for help, reframe your thinking.
Try, “this adjustment is something that will help me achieve my recovery goals,” or “This person offered to help and wants to be there for me, just as I would want to be there for them.” Changing or improving even one area of your life can help you regain a sense of optimism and energy.
If you’d like additional guidance on managing life with illness, you can order a Chronic Disease Self-Management Program: Toolkit for Active Living, or enroll in Self-Management Education Programs for Chronic Conditions. The toolkit and workshops are both offered by the CDC.
Make time for fun and relaxation
When you’re managing an illness, it can become the center of your life. Going to appointments, doing therapies, and organizing medications is almost a full-time job. You might feel like you don’t have time or energy to do anything enjoyable, or you might think that any spare energy should be used on something “productive.”
But everyone, sick or well, needs time for relaxation. Finding ways to have moments of joy is a critical part of managing illness. Living a Healthy Life with Chronic Conditions, the workbook that comes with the CDC Chronic Disease Self-Management Program: Toolkit for Active Living, says, “Small daily pleasures can help balance the other parts of your life in which you have to manage uncomfortable symptoms or emotions.”
No matter how Lyme disease impacts your life, there are still ways you can incorporate joy. If you don’t have the energy for a whirlwind sightseeing trip to another city, perhaps you can plan a short day trip somewhere nearby. Or if that doesn’t feel feasible, how about sitting in a recliner with a travel magazine to create a “staycation” right in your living room? Other ideas for simple pleasures might include planning a game night with friends, taking a bath, or making your favorite dessert. Schedule time for pleasure and self-care just as you do for appointments. You can even make action plans for fun and relaxation.
1. Behavioral Health Recommendations for Managing Long-COVID Symptoms. Critical Illness and COVID-19 Survivorship Program, Beth Israel Lahey Health, 2021.
2. Conquering Lyme Disease: Science Bridges the Great Divide. Columbia University Press, 2018.
3. Health+ Lyme Disease. HHS website, April 2021.
4. Living a Healthy Life with Chronic Conditions. Bull Publishing Company, 2020.
5. The Healing Power of Storytelling. North Atlantic Books, 2022.