Working Toward Recovery

If you have been battling Lyme disease for weeks, months, or years, you may be wondering when or if you’ll get better. While your doctor may not be able to predict exactly how much better you’ll feel, and when, they may be able to help you set reasonable expectations on what your progress toward recovery might look like: what short- and long-term goals to focus your energy on. 

For some people, recovery may mean getting back to, or close to, their pre-Lyme life. Others with more debilitating symptoms may need to prioritize their health goals and work toward making steady gains over time. People with Lyme disease experience varying degrees of recovery, and some will experience improvements in certain areas more than others. Recovery won’t necessarily be linear, and often evolves over time. 

The CDC offers a Chronic Disease Self-Management Program: Toolkit for Active Living, as well as Self-Management Education Programs for Chronic Conditions, which provide step-by-step guidance on ways to manage your recovery. You can order the toolkit or enroll in an in-person workshop to learn skills to help you work towards recovery. 

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What will recovery look like for you? 

As you think about your own recovery, a good place to start is with a list of health goals for different life domains. Consider which parts of your life have been most impacted by your illness and what you’d eventually like to be able to do again.

For example, perhaps you’ve experienced Lyme-related brain fog and had to switch to a job that requires less mental energy. Your goal might be to get back to the more challenging work you once did. Have you had to switch to remote work because your commute was too physically draining? Your goal might be to have enough energy to get back into the office one or two days a week. Or perhaps you’ve had to stop working altogether due to debilitating fatigue. You might want to create a plan to help you return to a part-time job.  Other examples might include:  

• Family: having the energy for a night out with your spouse, or being able to manage bath and bedtime for your kids if you’re currently too tired to do so 

• Other relationships: attending your monthly book club or hosting a movie night for your friends 

• Activities you value or enjoy: being able to exercise (for some, this may mean getting back to your old level of activity. For others, it may mean being able to go for a walk when you used to go for a run), volunteering, or visiting local art galleries. 

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Share with your doctor what you hope recovery from Lyme disease will look like for you. You know your values and priorities best. Your doctor may not be aware exactly how Lyme disease has impacted different domains of your life, including work, family, or other relationships, and they may not know what you hope togain back in each of these areas. Telling your doctor what your goals are will help you to engage in shared decision-making about the best course of action for you.

A worksheet can help you organize your thoughts and can help frame a conversation with your doctor. 

Achieving your ultimate definition of recovery might take time and patience. If you currently don’t feel well enough to get off the couch, it can be hard to imagine that dream of returning to full-time work becoming a reality. 

Try not to feel discouraged. Setting realistic short-term goals can help you reach your long-term vision of recovery. 

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Start with one meaningful, long-term goal. Make a list of short-term goals that could help you reach that long-term goal. Now pick one of those short-term goals—no short-term goal is too small—and make a list of action items and give yourself a reasonable deadline to complete them. If your short-term goal is to do a couple of hours of volunteer work, options might include researching local organizations that are looking for volunteers or asking friends about their volunteer work. 

Pick one option to start with and create an action plan for something you can accomplish within the next week. An action plan should answer the following questions:  

• What are you going to do? Call local organizations to see if they are looking for volunteers. 

• How much will you do? Decide how many organizations you think you could reasonably call this week. 

• When will you do this? What day(s) and time(s) will you make these calls? 

• How often will you do it? Does it feel feasible to make one call a day, or would be it be better to make three calls total this week?

Action items should be things you reasonably think you can accomplish at this stage of your recovery. If you’re still very sick, your action plan may need to be making a specific accommodation or adjustment to your daily schedule so that you can get more rest, which may then eventually enable you to be able to do some volunteer work. (For more information on making accommodations and adjustments, see Optimizing Life with Lyme Disease.) 

At the end of each week, measure your success. Take comfort and pride in the fact that you are taking positive steps toward recovery. If an action plan doesn’t work, take a look at why, and either make some tweaks to the plan or pick a different option from your list. Over time, your action plans can help you achieve your short-term, interim, and long-term recovery goals. 

Whatever recovery means for you, it can take time and patience to meet your goals. It can feel like trying to walk up a down escalator or taking one step back for every two steps forward. You may re-experience a symptom that went away for awhile or feel fatigued after a few days of feeling relatively energetic. 

It may help to think of your healing journey as a series of connected loops. As you recover, you’ll take steps forward, but may also find yourself spiraling back through symptoms or emotions that you thought you’d finished with. Circling back on a symptom or feeling doesn’t mean you’re back at the beginning (though if you continue to feel worse, talk to your doctor). When you recover from the setback, you’ll still be ahead of where you started and you’ll continue moving forward. 

It might be hard to see improvements day-to-day when you experience so many starts and stops. Doctors advise long COVID patients to try to compare their overall improvement to their lowest point of illness rather than to their pre-illness life. That approach might be helpful for people with Lyme disease, too. 

Most of all, be patient and gentle with yourself as you recover, and take time to celebrate your victories.