Supporting Someone with Lyme Disease

Believe them—even if you don't fully understand what they're experiencing. Belief communicates respect and dignity and makes it easier for someone to tell you what they need. You don't need to have all the answers or be able to fix what they're going through. Being willing to listen, learn, and show up matters.

• Don't minimize their symptoms or experiences, even when they are difficult to understand.

• Don't reduce your loved one to “just a sick person.” Illness may change what they can do, but it does not diminish who they are or their inherent worth. Respect their limits while continuing to see and value them as a whole person.

• Avoid giving unsolicited advice. Listen first, and ask before offering suggestions, treatments, resources, or solutions.

• Ask what kind of help would be useful rather than assuming what they need.

• Learn about Lyme disease and other tick-borne diseases so your loved one doesn't have to explain everything themselves.

• Check in regularly. Needs, symptoms, energy, and emotions can change from day to day.

• Be patient when plans, abilities, or needs change.

• Spend quality time together, even when that time looks different than it once did.

• Remember that you don't have to fix everything. Compassion, presence, and practical help can make a meaningful difference.

Really listening involves more than hearing what happened. Give your loved one room to describe their experience in their own words. Ask questions with curiosity, and try not to immediately compare, explain, problem-solve, or look for a positive side unless that's what they're asking for.

• Learn about Lyme and other tick-borne diseases. These conditions are complicated and not commonly understood. Even a basic understanding can make a huge difference for your loved one and help you navigate your experiences as a supporter.

  • Explore Lyme & Tick-Borne Diseases: The Basics→

• Hear directly from people affected by Lyme and other tick-borne diseases to better understand the experiences your loved one may find difficult to explain—or that you may find challenging to believe.

  • Explore Lyme stories→

  • Explore the Generation Lyme Podcast→

• Connect with people who understand what it’s like to support someone with Lyme or another tick-borne disease. Our Meet-Ups for supporters and parents are places to learn from and lean on others—ask questions, share what’s on your mind, and find support for yourself.

  • Explore Meet-Ups→

Illness can create financial pressures far beyond medical bills. Testing, treatment, medications, transportation, reduced capacity to work, and everyday living expenses can add up quickly. Understanding the financial impact—and asking what kind of help would be most useful—can make a meaningful difference.

• Ask where financial pressure is greatest. The most useful help may involve medical expenses, transportation, groceries, housing, or another everyday need.

• Help research financial assistance. Generation Lyme maintains a list of programs that may help with testing, treatment, medications, and other healthcare expenses.

  • Explore Financial Assistance Programs→

• Offer help with applications or paperwork if your loved one wants it.

• Help organize a fundraiser when appropriate.

• Offer practical career support if someone is navigating changes in their ability to work, such as help with a résumé, references, or searching for opportunities that better fit their needs.

Keep the conversation going, and ask your loved one what practical or physical support they may need as they navigate Lyme or other tick-borne diseases.

• Offer transportation to appointments or other important commitments.

• Help with everyday tasks such as cooking, cleaning, laundry, errands, or shopping.

• Make accommodations without judgment when plans, environments, or activities need to change.

• Ask rather than assume. What is helpful one day may not be what someone needs the next.

• Help research healthcare providers—if asked. Finding a provider with experience in Lyme and other tick-borne diseases can be challenging. Offer to help research options, make calls, or organize information if your loved one would find that useful.

  • Find a Lyme-Literate Doctor→

Having someone in your corner can make a huge difference.

Navigating Lyme disease can be complicated, especially when symptoms are complex, diagnosis has been difficult, or a person feels their concerns aren't being fully heard. Sometimes support means helping someone advocate for themselves; other times, it means helping create broader change.

Advocacy should respect the individual’s choices and preferences. Ask how you can help, and let your loved one guide the role they want you to play.

• Help prepare for healthcare appointments by organizing questions, symptoms, medications, records, or other information, if your loved one wants that support.

• Attend appointments when invited. Listen, take notes, help ask questions, and support your loved one in making sure their symptoms and concerns are heard and understood.

• Help navigate insurance and administrative issues when requested. Calls, paperwork, appeals, records, and other logistics can add another burden when someone is already managing illness.

• Raise awareness by learning about Lyme and other tick-borne diseases and helping others understand the experiences of people affected by them.

• Support broader advocacy for improved awareness, education, research, patient care, public policy, and other changes that matter to people affected by tick-borne diseases.