Growing up is overwhelming and for a child with a chronic illness such as Lyme disease, it’s even more challenging. As with any chronic illness, the impacts are felt differently by the child and their support network. Children with Lyme will struggle with the unpredictable symptoms while parents too, will feel the pains of their children.
Raising a child with Lyme can be difficult, more-so when a child faces social pressures at school for being sick. This includes learning disabilities, depression, physical disabilities and neurological issues. But our strengths are magnified when we are prepared as parents & caregivers. Here are some ways that you can prepare and play an important role in your child’s growth and development as they heal from Lyme or tick borne diseases.
Gather Information and Analyze. Get The Best Picture You Can About Your Child’s Wellness and Community
Lyme disease is can be very difficult to diagnose. In fact, when Lyme was first discovered in Connecticut it took years for doctors to understand that the cluster of children diagnosed with juvenile arthritis was more than just a higher occurrence than normal. In fact, it took almost 10 years to figure out that these cases in Lyme, Connecticut was caused by a bacterial infection. Factors that helped identify the problem focused on patterns and ruling out other illness through testing and research.
Patterns in children’s behaviors, energy levels, and health tell a lot about their state of wellness. Sudden drops in energy levels, complaints about pain, nausea, or any deviation from their usual selves might be a sign that something is wrong. Getting a good picture of what changes occurred and documenting the events leading up to that sudden change can help determine if a visit to the doctor is warranted. That doctor should be well-versed in Lyme, such as a Lyme-Literate Medical Doctor (LLMD) or Lyme-Literate Naturopathic Doctor (LLND), who will be more willing to work with you in treating Lyme disease and making appropriate referrals.
Understanding Your Child’s Community
This is crucial to their wellness, too. Chronic illness is difficult to handle and being in a supportive environment can increase the potential for healing. Schools, social institutions outside of school and friends play a strong role as they begin to understand what your child is going through. That allows them to offer support as well.
The opposite end of that spectrum is the potential of a child with chronic illness to experience bullying because of their condition. Lyme disease, with its coinfections, can even produce behavioral and psychological changes in a person. It is important for people to understand that changes in a child with chronic Lyme may happen because of the disease. Other children might not understand why your child is “different” and that can lead to bullying.
Learning more about your child’s illness and their external social and environmental pressures can give you a clearer picture about what your child has to deal with outside of your supportive environment. Talk with your child and ask them about what they experience on a daily basis. This can allow you to share and develop strategies to teach your child, so they can grow up with effective coping mechanisms and healthy habits.
What Is A Patient Advocate? Communicating With And For Your Child With Lyme
Aside from gathering information and knowing external pressures, a good goal is to encourage your child to talk about their health. Conversations about pain and wellness help children learn about communicating what they are feeling. This allows you to better communicate with the health professionals that are coordinating care.
As their parent, you will always know when your children are feeling unwell. A patient advocate speaks on behalf of the patient in order to deliver a clear message about their current medical situation. Your ability to innately listen to your child will be useful when speaking to their doctors.
Communication and active listening can be crucial tools in helping your child deal with chronic illness. Repeating back to your child whatever symptoms they are feeling lets them know they were heard, and it tells them that you understand what they are going through.
Build A Team
Working with others toward a common goal makes difficult tasks more achievable. Chronic Lyme disease can be a complicated issue and requires the help of many health professionals. Building a team of competent, caring and coordinated professionals can lighten the weight on your shoulders and help to spot patterns easier because of their experience.
Lyme’s impacts each person differently. While struggling with illness, it is possible to develop psychological symptoms like Post Traumatic Stress Disorder. So, your child’s emotional and psychological needs may have to be considered alongside health and nutrition.
Surround Yourself With Supportive Teammates
Chronic Lyme disease is tricky, and it can be isolating as you go from appointment to appointment trying to care for your child’s health. It’s important to surround yourself with supportive family members, friends, and coworkers, so you don’t feel isolated. Your child will also pick up on your mental and physical health, so self-care is vital, as you can only provide support if you are healthy.
Raising a child with chronic Lyme disease can be trying. However, there is hope. An important part to remember about ourselves is that we are resilient. We can support each other and provide an environment that promotes and encourages healing in our children and in ourselves.