Self-Advocacy

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.

Navigating the health care system

Self-advocacy skills can help you navigate the health care system, from finding a doctor you’re comfortable with to managing insurance claims.

Finding the right doctor for you

If you feel like your needs aren’t being met by your current doctor—even if it’s someone you’ve previously had a good relationship with—it may be time to look for a new one. Making sure you feel heard and seen by your physician is an important part of self-advocacy.

Whether you’re seeing a doctor for Lyme disease, bronchitis, or an annual physical, you want someone whose expertise you trust and who you feel will provide you the care you need. These days many physicians take a collaborative approach to medical care. This means they work with you to achieve your health goals by helping you understand treatment options (giving you informed choice) and making decisions with you based on their clinical expertise and your values (shared decision making). This type of collaborative care can be key to managing complex illnesses like Lyme disease.

As physician and multiple sclerosis patient Annie Brewster, MD, suggests in The Healing Power of Storytelling: Using Personal Narratives to Navigate Illness, Trauma, and Loss, “Find a provider you trust, who listens and sees you as a whole person, rather than just a disease—someone who honors your opinions and inquires about what is most important to you. Yes, it is true that there may be ‘best practices’ in terms of treating a disease, but these practices are often defined by disease response rather than by patient preference or quality of life.”

If you are part of a Lyme disease support group, someone there may be able to recommend a physician (for more information on support groups, see Support Systems). Your current doctor can recommend a specialist or someone who can give a second opinion. You can also contact your health insurance provider to get a list of covered physicians in your area.

Some doctors may be willing to do a brief phone interview so you can see if they are a good match for you. Others will require you to come in for a first appointment. When you speak with or meet the doctor, you might ask:

• Do they practice collaborative care? In other words, are they interested in engaging you in decisions by finding out your priorities and goals?
• What is their communication method? Will you be able to contact them if you have questions or concerns, or will you need to wait until a follow-up appointment?
• If you were to disagree with a recommendation, would they be willing to talk through their reasoning and hear you out on your concerns?

It may take some trial and error to figure out if a doctor is right for you. You can schedule appointments with more than one doctor to find the best fit. Just be sure to contact your health insurance provider to find out if the appointments will be covered.

Factors like insurance coverage and where you live may limit your choice of doctors. But even if you want to switch doctors and can’t, there are ways you can advocate for the best care from your current provider, such as changing how you communicate with them to help them hear your needs and concerns. Research shows that improving the doctor-patient relationship can have positive effects on your health.

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.

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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.

Staying organized

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.

Appointments

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.

Navigating health insurance

In addition to managing doctor’s appointments and treatments, you are also probably trying to figure out health insurance coverage for them. This isn’t easy even when you feel well. Here are some tips to make the process a little simpler.

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Acquiring health insurance

If you are no longer able to work due to Lyme disease, or if you are in between jobs when you get sick and are not covered on a family member’s plan, you will need to get health insurance. There are a few options. When exploring them, find out if your doctor is covered by the plan and what your out-of-pocket costs would be for appointments, lab work, and prescription medications.

Medicare

Though we often associate Medicare with retirement, this federal health insurance program is available not just for people 65 or older but also for younger people with disabilities. If you receive Social Security Disability benefits (SSDI), a federal program that pays monthly benefits to certain workers unable to perform their duties because of a significant illness or impairment, you are eligible for Medicare after a 24-month qualifying period. If you have SSDI and are waiting for the 24-month qualifying period for Medicare to end, you can look into Medicaid, private insurance, or insurance through a former employer. To learn more about Medicare, visit www.medicare.gov.

Medicaid

Medicaid is a health insurance program for low-income adults, children, pregnant women, and older adults and people with disabilities. It is funded by both state and federal government. You can see if you qualify based on your income or disability status and apply online through your state’s Medicaid agency, or through the Health Insurance Marketplace (see Private insurance). You can apply for Medicaid any time. To learn more about Medicaid, visit www.medicaid.gov.

Private insurance

You can enroll in a private health insurance plan through the Health Insurance Marketplace, which lists various plans available in your state. Plans have different costs based on the coverage they offer. You can enroll in whichever plan works best for you; costs are not related to your income or employment. The Open Enrollment period is from November 1st to January 15th. If you need to apply for a health insurance plan outside of these dates, you can see if you qualify for a Special Enrollment Period.

Insurance through a former employer

If you have health insurance through your employer but you need to stop working due to Lyme disease, you can ask your employer if you are eligible for Consolidated Omnibus Budget Reconciliation Act (COBRA) coverage, which allows you to continue your health insurance through a former employer for 18 months. You may be required to pay the cost of the coverage.

Coverage for appointments and treatments

Check with your health insurance provider to see if your doctor is covered by their plan (in-network) and find out how much you will need to pay for a doctor visit (copay). If you choose a doctor who is not covered by your insurance plan (out-of-network) and you pay out-of-pocket for the appointment, you can ask your provider for a “super-bill” after the appointment. This is the form that a doctor’s office would otherwise submit to insurance for coverage. If your insurance covers partial costs for out-of-network providers, you can submit the super-bill yourself and see if you get some reimbursement. Call your insurance company or check their website to find out how to submit a super-bill, and what the appeal process is if coverage is denied.

In most states, health insurance companies only cover Lyme disease treatment if you meet the CDC diagnostic criteria for Lyme disease (for more information, see Diagnosis and Testing). Most insurance providers also follow CDC recommendations for length of treatment, meaning they will usually pay for 10 to 14 days of antibiotics (sometimes up to 28 days for late-stage Lyme disease).

Some states have passed legislation mandating that insurance companies cover Lyme disease treatment for longer periods of time, at the prescribing doctor’s discretion, or requiring coverage of diagnostic testing for Lyme disease. As of March 2023, states with laws regarding coverage for Lyme disease include Connecticut, Illinois, Minnesota, Pennsylvania, and Rhode Island. New York has a pending law that, if passed, would mandate coverage of long-term Lyme disease treatment. If you live in one of the states that mandates coverage, you should check with your state legislature to see what the specific coverage is.

If your health insurance provider denies coverage for your Lyme-related appointments or treatment, there are a few steps you can take:

• Appeal the denial. Call your insurance company or check their website to find out how to submit an appeal. You or your doctor may need to provide paperwork stating why you think your treatment or appointment should be covered. If an appeal is denied, sometimes there is a process to appeal again.
• Contact your state’s insurance commissioner to see if they can offer any assistance. This is a person who serves as an insurance regulatory authority for your state.
• Contact pharmaceutical companies directly. Your pharmacist or doctor can tell you the name of the company that makes your medication. Check the company’s website to see if they offer any assistance programs for people who don’t have insurance coverage and meet certain financial criteria.

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Getting help from a patient advocate

Patient advocates are individuals who can help guide you through the health care system. They can assist with navigating health insurance, setting up appointments, and communicating with your doctor.

Check with your local hospital to see if they have in-house patient advocates, or find one through Greater National Advocates or National Association of Healthcare Advocacy. Private patient advocates are paid out-of-pocket and can cost anywhere between $75 to $450 an hour. Some nonprofits like the Patient Advocate Foundation lend their services for free. Patient advocates do not require certification to practice, though they can take an examination through the Patient Advocate Certification Board.

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.

“I was ashamed, embarrassed, and never wanted anyone to know I was always sick. I didn’t want my employer to judge me.”

Lyme Disease Patient Experience Survey Respondent
Female, 40, New York City, NY

In addition to talking to your human resources department about accommodations you may be entitled to, you can find more information through the Job Accommodation Network, a division of the U.S. Department of Labor, or the Equal Employment Opportunity Commission (EEOC).

Medical leave

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.