Learn how to find the right doctor for you, navigate the health care system, and speak up for your needs related to health care, insurance, employment, and other areas of your life impacted by Lyme disease.
What is self-advocacy?
Self-advocacy is a way to take an active role in your health journey. It involves communicating your preferences and concerns, making informed choices, and having a say in your care.
Self-advocacy helps you be involved in decisions about your life that may be impacted by Lyme disease, from medical care to health insurance to employment. This might mean gaining the confidence to ask a doctor questions, to communicate your health goals and priorities, or to change doctors if your current provider isn’t meeting your needs. It might mean finding ways to organize medical paperwork and manage insurance claims. It can mean learning your rights as a person with a serious illness, to make sure you receive insurance or employment benefits to which you may be entitled.
When you’re not feeling well, especially if you’re worn down from symptoms like fatigue or brain fog, it can be difficult to speak up for your needs. We’ll show you how to be your own best advocate—or to find others who can help—so that you feel empowered rather than deflated as you work toward recovery from Lyme disease.
Communicating with your doctor
Doctor’s appointments can feel overwhelming because you only have a short period of time to share how you’re doing, hear your doctor’s input, and ask questions. It’s especially difficult if you have trouble articulating your thoughts because you don’t feel well.
On average, doctors tend to interrupt patients within 30 seconds from the start of a conversation. You might feel frustrated if your doctor interrupts with questions from a checklist before you have a chance to say what you need, or if you raise a concern that your doctor doesn’t address. Evidence shows that communication gaps between providers and patients affect health outcomes, but there are steps you can take to close those gaps.
Before your appointment
If this is your first appointment with a new doctor, write a brief summary of your medical history that provides a timeline of your illness. (For more information, see Notes for your doctor.) You can ask the doctor to read the summary at the start of the appointment. Also bring any recent lab work, including any tests for Lyme disease, and a list of your current medications.
If this is a follow-up appointment, write a brief summary of how you’ve been feeling since your last appointment. You can give the summary to your doctor at the start of your appointment to help guide the conversation. You can also ask your doctor if they would prefer you send the summary to them a couple days in advance, so they have a chance to review it before the appointment.
Write out a list of any questions or concerns you’d like to address at the appointment. If you have many, highlight two or three that are most important to you.
Ask a family member or close friend to come to the appointment with you, to take notes and to ask questions you might not think of.
During your appointment
At the beginning of the appointment, give your doctor any written summary you have, and let them know if you have a list of questions and concerns. You might say something like, “I have things I want to discuss, and I know you do, too.” This will allow you to set the agenda for the appointment together.
Make sure your doctor tells you the risks and benefits of any treatment options they suggest. The American Medical Association maintains that physicians should disclose and discuss the risks and benefits of all of the different treatment plans available, so that you can have an informed role in the shared decision-making process.
As you and your doctor weigh the risks and benefits of treatment options, tell them what’s most important to you: What are your recovery goals, what symptoms are most bothersome, what treatment side effects are or aren’t you willing to tolerate, and what are you hoping to be able to do again? Shared decision-making means you share your values and priorities, and your doctor shares their medical expertise, so that you can come up with a treatment plan that works for both of you.
If you don’t feel comfortable with something your doctor suggests, tell them why and ask what other options are available.
Take notes or have an accompanying family member or friend take them. This will help you later when you want to remember instructions for your treatment plan or anything else the doctor said.
Ask your doctor for clarification if they say something you don’t understand or if you have a question.
If you feel that your doctor has not addressed a concern you’ve raised, or if they haven’t answered your questions, raise these again before the end of the appointment.
Before you leave
Repeat back to your doctor key points of the appointment to make sure you understood correctly.
Be sure you are clear on next steps, such as following a specific treatment plan or getting lab work done.
If your doctor provides an After-Visit Summary with this information, make sure they give you a printed copy or that you know how to access it on your patient portal.
Ask your doctor how you should communicate with them (such as patient portal, email, or phone) if you have questions or concerns before your next appointment.
Make sure you know how and when you should expect to receive results of any lab work.
Schedule your next appointment.
There’s a lot to keep track of when you have Lyme disease, from doctor’s appointments to fluctuating symptoms to medical paperwork. Staying organized can make it easier for you to be a good self-advocate.
Use a daily planner, set reminders on your phone, or use a smartphone calendar or reminder app to help you schedule and keep track of various appointments.
Lab results and paperwork
Organize your files—whether paper or electronic—by topic such as test results, appointment notes and treatment instructions, and medical bills. Arrange files by date, so that you can easily access recent test results and appointment notes.
Keeping track of symptoms and treatment response
When a doctor asks, “So how have you been feeling?” it can be hard to remember or summarize, particularly with an illness like Lyme disease in which symptoms can wax and wane. A symptom diary can help you keep track of daily symptoms, while a symptom management journal can help you monitor your response to management techniques or treatments. You can file these documents with your other paperwork, so that you can chart your progress over time. (For printable templates of a symptom diary and a symptom management journal, see For Those with Lyme Disease).
Notes for a first appointment with a new doctor
When seeing a doctor for the first time, they will likely ask you for your medical history, and about the symptoms that have brought you to the appointment. You can prepare this and additional helpful information in advance by writing out a brief (one-to-three-page maximum) summary. Include the following information:
When did you first experience Lyme disease symptoms? When were you diagnosed?
What symptoms are most impacting your day-to-day quality of life right now?
What other symptoms have you experienced with Lyme disease? Are any still bothering you now?
What are your recovery goals? (Examples: Return to work part time; play soccer again)
Current medications (medication name, dose, and how often you take it)
Have any treatments worked particularly well for you in the past? Were any treatments particularly difficult or unhelpful?
Other health information (other conditions, surgeries, allergies, family history)
Is there anything else you would like your doctor to know? (Examples: family situation, outside stressors)
To download a printable form you can fill out and take to your appointment, see For Those Living with Lyme Disease.
Notes for a follow-up appointment
Before meeting with your doctor, you can review your symptom diary and symptom management journal, making note of patterns or anything that jumps out at you, such as symptoms that are particularly bothersome or that are affecting your quality of life. You can then write a brief summary (one page maximum) to give to your doctor at the beginning of the appointment, or beforehand depending on their preference.
Making decisions about employment
Lyme disease may impact your ability to work. You may find that you need accommodations at your current job, that you need to switch to a different type of employment, or that you need to take time off from work.
Talking to your employer about accommodations
If Lyme disease is impacting your ability to go to work, do your job, or do it well, you may want to talk to your employer about making adjustments to accommodate your needs.
The Americans with Disabilities Act (ADA) requires that employers make reasonable accommodations for disabled workers, defining disability as a physical or mental impairment that substantially limits one or more major life activities. However, employers don’t have to provide accommodations if those accommodations would require significant difficulty or expense.
The first step is to determine what information you should share to get what you need. It’s important to remember that advocating for your health-related needs is not the same as disclosing your condition.
While you can share your Lyme disease diagnosis with your employer if you’d like to, you also can just discuss symptoms and the way they impact your work capabilities. Perhaps you are exhausted from your commute, so you need to work remotely a few days a week. Or you are struggling with brain fog and need more time to complete an assignment, or a quieter workspace if you are sensitive to sound. You don’t have to tell your whole story; the focus of the conversation should be on how your illness is impacting your ability to do your job well, and on the accommodations or adjustments that could solve the problem.
The next step is to decide with whom you should have this conversation. The answer to this question varies by employer and depends on who has the authority to provide the accommodations you need. This may be your direct supervisor, or it may be someone in a more high-level management position. You may want to start with your company’s human resources department, particularly if you have concerns that sharing your health needs with a supervisor or manager could have negative repercussions on your employment. Your human resources department can help you determine what your next steps should be, and they can also review with you your rights as an employee with an illness.
If your Lyme disease symptoms are debilitating, you may need to take some time off work. Talk to your employer or human resources department to find out if you have access to Short or Long Term Disability Benefits. The Family and Medical Leave Act (FMLA) is a federal law that entitles eligible workers of covered employers to 12 work weeks of unpaid leave in a 12-month period. There are qualifying conditions both in terms of the illness and your employment. Check the FMLA website and talk to your employer to see if you qualify.
If Lyme disease leaves you unable to work for at least a year, you can apply for Social Security Disability Insurance (SSDI). To qualify, you must meet the program’s disability and prior employment requirements. Check the SSDI website for qualification and application information. Bear in mind that the application process for SSDI can take a while. It takes an estimated three to six months for an initial decision. If denied, you will have the option to appeal, and if denied again, you can request a hearing before a judge. For legal aid with the process, your local Social Security office can provide you with a list of organizations that can guide you to a representative. If you are approved for SSDI benefits, there is a five-month waiting period before disability payments begin.
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