I wish someone had sat down with me when my child was diagnosed with neurological Lyme and Bartonella infections, and said, “Let’s look at your personal goals, your finances, your marriage, your lifestyle, professional aspirations, friendships, priorities and values, and identity as a mother. Lets talk about your family and how one child’s illness can affect others. Let’s first acknowledge that all of these will change, and then come up with a plan for what we can do about each.” What a difference that would have made! Instead, I spent several years in a whirlwind, and realized only in hindsight how much our lives were affected.
Pediatric Lyme and tick-borne disease can cause mental, physical, and emotional health problems that pose a significant challenge to our families, communities, businesses, health care systems and schools.
There are 6 distinct life areas that must be addressed when parenting a child with a tick-borne disease, disability, or chronic illness (but you do not need to be in this specific situation to benefit from considering these aspects of your family life!)
This includes diet changes, skills like organizing and planning, and also how we adjust our values and priorities to accommodate illness or crisis.
The symptoms and experience of a child’s chronic illness are not limited to him or her. Siblings are significantly affected. Marriages are challenged. Financial stress can impact the entire family. Schedules, routines, holidays and family traditions may all be disrupted.
Your relationship with a school can depend on your child’s symptoms, their experience before they became ill, and school personnel. It can be challenging to advocate for your child and find a way for them to thrive in a system that may not be designed for their unique circumstances, or lacks an understanding of the way Lyme symptoms can affect their social development, cognitive processing, and learning.
When your child is ill you must adjust goals and expectations, for yourself, your family and your child. Your professional life may be affected, your relationships may change, and you may question the spiritual values that once brought you comfort and peace.
A parent who is exposed to their child’s vulnerability on a daily basis has a different experience than a parent with healthy children. It is important to find a support system of people who share and understand your experience. It is also necessary for communities to become more compassionate and helpful to families of children struggling with tick-borne illness, and emotional, intellectual or physical disabilities.
It is essential to find doctors willing to practice collaborative medicine - a strength-based, person-centered model of health care that considers diet, lifestyle choices, stress, relationships, resources, environment and personal goals in treatment plans. When your child is ill, you are often making ‘gut decisions’. These may go against the values of your doctor, family, or culture. Parents in this situation may feel isolated, and exhausted from defending their decisions to others. They need supportive, collaborative relationships with physicians and care providers.