If you have Lyme disease or care for someone who does, learn ways to get the emotional and practical support you need.
Why are support systems important when you are unwell?
We all rely on—or wish we could rely on—support networks to get us through the ups and downs of life. Support systems, which may involve some combination of friends, family, neighbors, colleagues, health professionals, and others, become that much more important when we’re sick. Emotional and practical support can make all the difference when you’re dealing with an illness that may drag on and affect your ability to live the life you want.
What do we mean by emotional and practical support?
Think of emotional support as love, understanding, and acceptance shown through care and compassion. It might mean listening to someone or simply giving them a hug. Practical support refers to tangible things that make your life a little easier, like helping with errands or preparing meals. People with Lyme disease often need both types of support, and sometimes their caregivers do, too.
Support can come in varying flavors and degrees. You might lean on a friend or family member to lend an ear once a week or take your kids to soccer practice on Saturday mornings. Or you may need someone to help you with everything from dressing to cooking, housekeeping, and coordinating doctor’s visits.
That degree of support, referred to as caregiving, also often comes from friends and family. More than 43 million Americans act as unpaid caregivers. Their efforts are indispensable in the lives of people struggling with illness. That level of support can also be provided by paid caregivers, which we’ll discuss later in this section.
For individuals with Lyme disease
If you have Lyme disease, here are some ways you can identify, ask for, and accept the emotional and practical support you need.
Support may come from a variety of sources including friends, family, and other people with Lyme disease or similar illnesses.
Getting emotional support from family and friends
When you’re sick, it’s easy for friends and family to be supportive for a short while. But when you’re unwell for a long time, as can sometimes happen with Lyme disease, support can wane. Illness can be an unwanted third party in relationships, and can cause family dynamics and friendships to shift.
You may feel like you aren’t getting the emotional support you need. It may seem like no one understands what you’re going through. You might feel like friends and family expect things of you that you simply can’t do right now. You may feel like some people don’t believe you. It doesn’t help when an illness, like Lyme disease, is poorly understood or misunderstood, which can lead to skepticism about your experience.
To get the emotional support and understanding you need, try using “I” messages to clearly communicate your feelings to family and friends. You might begin a conversation with “I feel.” For example, rather than saying something accusatory like, “You just don’t understand how tired I am,” you could try an “I” message to state a specific feeling like, “When you call me lazy for not making dinner every night, I feel like you don’t understand how exhausted I am.”
You can then ask for the type of support that might help the specific issue, whether it’s the emotional support of having your spouse validate your symptoms, or practical support like having neighbors start a meal train.
Supporting those who care about you
Lyme disease affects the person who is sick, as well as their friends and family. The people who you’re turning to for support may have their own feelings or frustrations about how Lyme has influenced their life, particularly if your illness has impacted their role or responsibilities. It’s important to support your caregivers as they, in turn, support you. Find out how they are feeling, both about you being sick and about things going on in their own lives. You might ask what has been particularly frustrating or difficult for them, and if there is anything you can do to help.
When support isn’t forthcoming
Sometimes others aren’t able or willing to offer support. If you feel like your family members are not hearing your needs or are dismissing your feelings, you might consider working with a couples or family therapist, particularly one who is familiar with the way long-haul illness can impact family dynamics. Consider whether certain relationships are hurting or helping your health. You may decide to distance yourself or to end relationships with people who bring you more stress than support.
Social isolation from illness can cause emotional stress. Connecting with others, particularly those who understand what you’re going through, may help relieve that stress. Outside of friends and family, you can find this type of connection through support groups— formal or informal connections with those who share common experiences and can offer emotional support and practical tips. Support groups can provide community, along with strength and validation. They can be a safe space to share your feelings or concerns and ask questions. In a Lyme disease support group, you might share your experience with certain symptoms or your frustrations about how Lyme has impacted your day-to-day life. Others may be able to encourage you or offer advice.
You can join a local or online Lyme disease support group. If you can’t find a group that focuses on Lyme disease specifically, you can try contacting a support group for illnesses that have similar challenges, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID, to ask if you might be able to join. You might also be able to find a general support group for people with serious medical conditions. Your doctor may be able to recommend a support group. You may also be able to find one by calling your local hospital or doing a simple Google search.
It can also be helpful to speak with an individual or family therapist. You can ask your doctor to recommend a therapist. Some therapists offer online or telehealth appointments in addition to in-person appointments.
If Lyme disease has interfered with your day-to-day functioning, friends, family, hired caregivers, or a combination of the three can provide practical support.
Asking for and accepting practical support from friends and family
When you’re not feeling well, you may need to rely on others for help with tasks that you ordinarily could do yourself. It can be hard to accept this and to ask for help. Rather than worrying that you’re burdening others, consider that family and friends usually want to help, just as you would want to help them if they were sick.
The first step in asking for help is to take inventory of what you need. Perhaps you need someone to drive you to a doctor’s appointment. It might be helpful to have a family member or close friend sit in on the appointment with you, to be another set of ears in the room, to write down information for you, and to ask questions you might not think of. Or maybe you need someone to watch your kids for a couple hours each afternoon so you can rest.
Next, think about who could realistically help with the specific task. Consider friends or family members who have offered, who would have the time and resources to pitch in, and who you would feel comfortable asking. When asking that person for help, be as specific as possible.
Though accepting help may feel uncomfortable at first, it will allow you to focus your energy on getting well. It will also allow you to focus on the things that are most important to you (for more information, see Optimizing Life with Lyme Disease). Often, once you accept someone’s offer of help, they’re more likely to ask again.
In addition to tapping family and friends, consider using paid services, like grocery delivery or housecleaning, to ease the load on everyone.
Getting outside support
You can also get practical support from hired caregivers or organizations and social services. When deciding what type of outside assistance to use, think about what your specific needs are. Do you need someone to take you to appointments and run errands for you? Or do you need someone to help with in-home tasks like cooking and cleaning? Do you need help bathing or taking medication? There are various levels of caregivers who can meet your specific needs. You may need to pay out-of-pocket for these services. Others may be free or low-cost.
There are different types of hired caregivers, including:
Home companions. Sometimes referred to as homemakers or home care aides, these are people who can keep you company and help with transportation, errands, meal prep, conversation, and light housework. Some home companions may also be willing to help with personal care like grooming needs. To be formally hired, a home companion must have a high school diploma or equivalent and will most likely need a valid driver’s license. You can also informally hire a neighbor or local college student to help with these tasks. Home companions are nonmedical caregivers, so there is no required training or certification to become one.
Home health aides. These aides provide personal services such as bathing and dressing and might do light housekeeping or prepare meals. Home health aides are also tasked with monitoring someone’s condition and checking vitals. They are federally mandated to have 75 hours of training, which mostly focuses on personal hygiene, monitoring vital signs, and nutrition. Depending on your state of residence, home health aides may be required to attend additional certification and continuing education and training programs. Home health aides may be mandated to be certified in basic first aid and CPR, because their duties are more health-related than those of a home companion.
Certified nurse aides (CNAs) or personal care attendants (PCAs). CNAs and PCAs are formally trained to help with activities of daily living like bathing, dressing, and grooming, and are legally allowed to provide this hands-on physical care. They are not nurses, though, so they cannot help with administering medication. CNAs are required to attend state-approved programs that prepare them to take the Nurse Aide Certification Exam. Certifications do not carry over state lines, so each CNA must apply to work within the state where they wish to practice.
Registered Nurses (RNs). Registered nurses offer skilled nursing care, such as administering medication, inserting intravenous lines, or changing bandages. RNs have either a bachelor’s degree in nursing, an associate’s degree in nursing, or a diploma from an approved nursing program, and they must be licensed.
To find a hired caregiver, contact a Home Care Agency near you. A Home Care Agency, also referred to as a Home Health Agency, is a licensed organization that is primarily focused on providing caregiving services. Home Care Agencies have policies to govern the services they provide. Your doctor can recommend one. The Family Caregiver Alliance can also help you connect to an expert.
Before hiring anyone, make sure they are qualified and have any needed certifications. Also find out how much the home care services you need will cost and whether you will need to pay out-of-pocket or if the services can be covered by your insurance. There’s a wide range of fees for hired caregivers. If using a Home Care Agency, make sure the agency is licensed by your state. If hiring outside of a Home Care Agency, you can use a home health care registry of independent home health workers. Depending on your state, local governments may have public registries available of certified home care workers in your area.
Organizations and social services
Social service departments within hospitals, religious organizations, and other community organizations may also offer some caregiver services, sometimes free or low-cost. Some organizations have case managers who can help assess your needs and identify community services that can help with them. You can find case managers through your local hospital’s social service department or family service organization. Your health insurance provider or primary care clinic may also be able to assign a case manager. Other organizations that may be able to offer services are Jewish Family Services, Catholic Charities, and The United Way.
For friends and family who care for people with Lyme disease
If you care about someone with Lyme disease—whether you’re a family member or friend, whether you live near or far—here are some tips on how you can best support your loved one, as well as tools for getting support for yourself, too.
Supporting someone with Lyme disease
You may want to show someone with Lyme disease that you care, but are not sure how to do so. Here are some ways you can offer emotional and practical support.
Offering emotional support
One of the best ways to support someone with Lyme disease is to validate their experience. Research shows that people with “invisible illnesses”—characterized by symptoms that aren’t always obvious to others—are at risk of negative responses like lack of understanding. People who have been dealing with Lyme disease for a long time may find that others start to question the severity of their symptoms, or maybe even question their Lyme diagnosis itself. Being dismissed or not believed can make someone feel worse, both physically and emotionally.
You can support someone with Lyme disease by learning about the illness (for more information, see Lyme Disease Overview and Experiencing Symptoms) and by acknowledging their experience and offering compassion. You might find yourself searching for the right thing to say. Comments like “You’ll get over this soon” can actually be discouraging. Listening and letting someone know you’re there for them might be all they need.
Offering practical support
You may want to offer tangible help to someone with Lyme disease, but not know how or what they might need. Our natural inclination can be to give a vague offer like, “If you need anything, let me know.” It’s actually more helpful to offer specific help in areas such as household chores, transportation, or socialization.
You might also offer something based on what you notice the person needs, like weeding their garden if you notice it’s getting overgrown, or dropping by with dinner one night a week if they tell you they are lonely or that cooking is tiring. You could also ask if they would like you to go to a doctor’s appointment with them to be another set of ears in the room, or ask if they need help with medical paperwork.
Remember that it is ultimately up to the person with Lyme disease to decide what they need help with and whether they want to accept or decline the support you offer. It is also okay for you to decline if someone asks you for help that you cannot give. You might consider offering an alternative solution such as, “I’m not available to run errands for you this week, but I’m free next Tuesday afternoon and would be happy to help then.”
Care for the unpaid caregiver
Supporting someone who is sick can take a toll. This can be especially true if more of the household tasks, childcare, or other responsibilities have fallen on you, perhaps for an extended period of time. According to the Family Caregiver’s Alliance, roughly 10% of people caring for someone who has been unwell for a long time feel that their own health has suffered as a result of their responsibilities. If you care for someone with Lyme disease, it’s important that you get support—both emotional and practical—and prioritize your own well-being. Here are some steps you can take:
Redistribute some caregiving tasks to other friends and relatives. Make a master list of what needs to be done and create a weekly schedule for who will do what, and when.
Seek emotional support by recruiting someone you can vent to, joining a support group, or speaking with a therapist. Many organizations, hospitals, and religious organizations offer support groups for caregivers. (You might also consider joining the person you care for at their support group, to learn more about what they’re going through.)
Express your feelings about the ways Lyme disease impacts you to the person you’re caring for. When someone is sick, effective communication is critical for everyone to get what they need.
Talk to your employer to see if you might be eligible for paid time off as a caregiver.
Set limits. Don’t wait until you are ready to snap to take a break; instead, say no to a request, or ask for help.
Have a self-care routine (eat well, stay active, make time for fun, find ways to relieve stress).
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Home health providers. Centers for Medicare & Medicaid website, September 2022.
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