WHY YOUR SUPPORT MATTERS: A GUIDE FOR LOVED ONES
Updated: 4 days ago
I consider myself a Lyme patient advocate. I'm a patient, so I understand how important support is. I was also a caregiver, so I have great empathy for caregivers too. You carry a burden as well, but you can make all the difference in your loved one's healing.
This post is one to share with a family member or friend, so they can grasp what you are going through. Having people in our lives who understand the true effects of this illness helps us feel less alone.
Short on time or energy? A quick-view graphic with the key points is at the bottom of this post.
PLEASE WATCH THIS VIDEO
I made this video for the loved ones of those with Lyme disease. If they watch nothing else, please have them watch this. It could make all the difference to someone who is feeling alone.
LYME IS AN INVISIBLE ILLNESS
- Many people with Lyme look fine on the outside. Some even have test results that come back "normal." That doesn't mean they are well.
- Global Lyme Alliance (2022) explains that others may assume someone with an invisible illness is "all better." Symptoms can flare and then ease for a while, which adds to the confusion.
- ILADS teaches that the Lyme bacteria can reach any organ or tissue in the body, which is why symptoms vary so much from person to person. Many patients see several providers, sometimes for months or years, before they get an accurate diagnosis.
- Harvard Health Publishing (2025) notes that people with invisible illnesses are at risk of not being understood. When an illness lasts a long time, others may start to doubt how bad the symptoms are, or even the diagnosis. Feeling doubted can leave someone feeling worse, in body and in mind.
HOW LYME CAN AFFECT DAILY LIFE
- ILADS lists common symptoms of later-stage Lyme: fatigue, severe headaches, joint pain, nerve pain, numbness and tingling, trouble thinking and remembering, pain that can disrupt sleep, chest pain or a racing heart, feeling short of breath or lightheaded, gut problems, and depression, anxiety and mood changes.
- Symptoms can change from hour to hour and day to day. Good days and bad days are hard to predict, so plans sometimes have to change at the last minute.
- In a LymeDisease.org survey of 3,090 people with chronic Lyme (2014), 72% rated their health as fair or poor, compared with 16% of the general population. About 42% had stopped working because of Lyme, and 25% had cut their hours or changed the type of work they do.
- In a 2026 study from Nova Scotia, Canada, people living with ongoing Lyme symptoms described shifting family roles, strain on their relationships and less ability to handle daily tasks.
- Treatment is often long and complicated, and it can be a real financial strain.
WHAT YOUR LOVED ONE MAY BE FEELING
- Scared. These symptoms are hard to even describe, and at times they are terrifying. They aren't exaggerating.
- Angry. If the anger is aimed at you, please know it usually comes from fear: fear of not getting help from the medical community, of the cost, and of not being as capable as they used to be. Please meet it with compassion.
- Lonely. It can feel lonely even with a wonderful family, because no one else knows what it feels like to be in your body.
- Guilty. Many of us feel guilty for needing help and for watching someone else carry our responsibilities. So most likely, we'll say we're fine. We are not.
- Insecure. We can feel like we've lost part of who we are. Please remind us of how great we are, despite this disease.
- Discouraged. Treatment doesn't make us feel better right away, and it's easy to lose hope along the way.
WHY YOUR SUPPORT MATTERS
- Being believed matters. A 2024 Johns Hopkins study of 80 people with post-treatment Lyme disease found that those who felt more misunderstood and dismissed by medical professionals also had worse symptoms, lower quality of life and less trust in doctors. The study shows a link, not a cause, but the researchers think less dismissal could help ease the burden of the illness and improve quality of life.
- Emotional health needs attention too. A large 2021 study led by Dr. Brian Fallon of Columbia University followed everyone in Denmark over two decades. People diagnosed with Lyme in a hospital setting had a 28% higher rate of mental health conditions, about twice the rate of suicide attempts and a 75% higher suicide death rate compared with people without Lyme. The rates were highest in the first months to years after diagnosis. It's one more reason to stay close and check in often.
- Your attitude matters too. Psychiatrist Dr. Robert Bransfield (2017) found that negative attitudes toward Lyme from family, friends and doctors may add to suicide risk in people with Lyme. Your belief and support matter.
- Support and community help. In the 2026 Nova Scotia study, connection with others and peer support gave people the validation they were missing.
HOW TO SUPPORT THEM
- Believe them. If they say they're exhausted or in pain, take them at their word.
- Be there and be present. Sometimes listening and letting them know you're there is all they need.
- Learn the disease from accurate sources. There is a lot of false information online. Learn about Lyme, the co-infections, the symptoms and their treatment. My Doctor Letter is a good place to start, with the newest Lyme science in one place.
DOCTOR LETTER
- Go to their appointments. This is huge. You can be another set of ears, take notes and ask the questions they may forget.
- Offer specific help. Asking for help is extremely hard, and pride often gets in the way, so don't wait to be asked. Instead of "let me know if you need anything," offer a meal, a ride, chores, errands or help with medical paperwork.
- Support their focus on healing: following their protocol, getting sleep, eating well and reducing stress.
- Make plans on their terms. A short walk, a movie or a show at home may work when a big outing won't. Please understand if they have to cancel.
- Small things mean a lot. A card in the mail can arrive on a really hard day.
- Remind them of their progress. It's hard to see when you're suffering with so many things.
- Learn what to do in an emergency. I even taught my children what to do and what to bring me if they saw me start to have a seizure or shake uncontrollably and I couldn't talk.
- Tell them how much you love them, often.
WHAT HURTS
- Questioning why they feel bad, or whether they're really sick.
- Saying things like "You'll get over this soon." Comments like this are usually meant kindly, but they can be discouraging.
- Pressuring them to do more. They can't just push through.
- Reminding them of what they aren't doing, or how much more you're carrying because of them.
- Leaving them out. Please still invite them.
- Avoiding them because their illness makes you uncomfortable. I promise you, they're more uncomfortable.
- Second-guessing their treatment choices. Each decision is made with a lot of care and worry. If you are truly concerned, talk about it gently and without judgment.
- "Tough love." In my experience, compassion helps far more than pushing harder.
COMPASSION OVER TOUGH LOVE FOR CAREGIVERS
IT'S A LONG JOURNEY
- Healing takes time, and it's often complicated. Some people heal faster than others, and there is hope.
- Please don't expect your loved one to be back to the person they were in six months. Sometimes it may look like we're moving backward.
- They are still in there. I used to tell my husband, "I'm in here." He knew I was.
- Don't treat them like a different person. We rely on the people closest to us to remind us who we are.
- Parents, Lyme in children can look like something else. Please read this post too.
PARENTS OF CHILDREN WITH LYME: SIGNS THAT LOOK LIKE DEPRESSION, ANXIETY OR ADHD
TAKE CARE OF YOURSELF TOO
- Caring for a sick loved one can wear you down too, especially when more of the household, childcare or other responsibilities land on you.
- Harvard Health Publishing (2025) suggests sharing tasks with other family and friends, finding a person to vent to, a caregiver support group or a therapist, setting limits before you reach your breaking point, and making time for your own self-care.
- Talk with your loved one about how Lyme affects you too. Kind, honest conversations help both of you.
A FATHER'S LETTER WORTH READING
LymeDisease.org shared a letter from a dad who once doubted his daughter's illness because she looked "normal" and her tests came back "normal." A Lyme-literate doctor helped him see how real it was. His message to families: the pain, the trouble thinking clearly and the lack of energy are real, and what our loved ones need is understanding, not pity, doubt or criticism.
MY EXPERIENCE
When I was extremely sick, I carried a lot of guilt, because I wasn't as capable as I used to be and I watched others carry my responsibilities. It was hard to even think about how hard it was on my caregivers, because I was so focused on surviving. Over time, I found that telling them how much I appreciate them, validating how hard it was for them too, and caring about their health created a better balance of love and support.
Your loved one needs a partner in healing. Learn accurate information and understand their symptoms and treatment, so you can help them. Be the hero they need. I promise they are worth it.
You can find my interviews here, including one on supporting a loved one with Lyme.
MY PERSONAL LYME INTERVIEWS
RELATED POSTS
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Support for the people caring for us, including our caregivers-only group.
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SOURCES
ILADS, Lyme Disease Basics for Providers (no date shown)
Harvard Health Publishing, Lyme Wellness Initiative, Support Systems (2025)
Global Lyme Alliance, How to Show Someone With an Invisible Illness That You "See" Them (2022)
Johns Hopkins, Rebman, Yang and Aucott, Invalidation by medical professionals in post-treatment Lyme disease, Scientific Reports (2024)
Columbia University, Fallon and others, Lyme borreliosis and mental disorders, American Journal of Psychiatry (2021, older source, still worth reading)
Bransfield, Suicide and Lyme and associated diseases, Neuropsychiatric Disease and Treatment (2017, older source, still worth reading)
Cox and Levesque, Living with persistent illness and uncertainty, Social Science and Medicine (2026)
LymeDisease.org, Johnson and others, Severity of chronic Lyme disease compared to other chronic conditions, PeerJ (2014, older source, still worth reading)
LymeDisease.org, When family members don't believe you have Lyme (2014, older source, still worth reading)
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.
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