The information below can help you better understand the unique challenges and difficulties for people who are living with Lyme disease and tick-borne illness, and their families.
1. Symptoms can change frequently. Because some Lyme symptoms are related to inflammation, they can vary from day to day. Someone with Lyme disease may feel up for hiking or playing sports one day, and be genuinely bedridden the next. Not being able to predict how you will feel, or knowing what you will be able to accomplish each day, can be incredibly frustrating.
What you can do: Be flexible and compassionate. Don’t accuse someone of ‘faking it’, or say, “they didn’t seem sick yesterday”. Try to understand when plans must be altered to accommodate changing symptoms.
2. People with Lyme disease may have to be very careful about what foods they eat. Some should not eat sugar, others find a gluten and dairy free diet important to their health. Their bodies may have difficulty processing alcohol or caffeine, and certain foods or beverages can lower their immune system. This makes dining at restaurants, or celebrating special occasions, difficult – especially for children.
What you can do: Avoid making fun of someone who needs to make food choices that are atypical for our culture. Even better – provide gluten free, dairy free, or low sugar (or sugar free) alternatives for your guest. Choose restaurants that can accommodate the dietary needs of someone recovering from Lyme disease.
3. They have to rest. ‘Overdoing it’ can have a major negative impact on someone healing from Lyme disease. For parents with young children, and people who had vital, vibrant lives before becoming sick, slowing down and doing less can be emotionally challenging. In addition, severe insomnia is common in people with Lyme disease, so they may not be getting enough rest at night (a problem when proper sleep is essential for a healthy immune system).
What you can do: Be patient. Be flexible. Cook them a meal, mow their lawn, babysit their children, drive them to a doctor appointment, help them any way you can. Recognize that people who used to be able to ‘do it all’ will not be able to – until they take time to heal. For children, remember that what looks like ‘behavior problems’ or ‘tantrums’ may be their only way of letting you know they need a break.