When I started my psychotherapy practice 22 years ago, specializing in adolescents and families, I recognized that, as a mother and as a psychotherapist, the core of my philosophy about children is that they need to feel safe and protected. Actually they need to be safe and protected. Four years later, when I started seeing children and adolescents with Lyme disease (one year after my own diagnosis), I realized that, in the world of Lyme, many patients do not feel safe and protected.

When I started my psychotherapy practice 22 years ago, specializing in adolescents and families, I recognized that, as a mother and as a psychotherapist, the core of my philosophy about children is that they need to feel safe and protected. Actually they need to be safe and protected.  Four years later, when I started seeing children and adolescents with Lyme disease (one year after my own diagnosis), I realized that, in the world of Lyme, many patients do not feel safe and protected. 

So that remained the foundation of my work as a therapist, both with the adults that I see and the children.  What changed was the realization that there are so many realms in which emotional safety is in jeopardy for families with Lyme, and so many situations in which they may find themselves in jeopardy, unprotected.

My own six years of misdiagnosis taught me how complicated Lyme was to diagnose, and the following four years of treatment taught me how complicated it was to treat.  These past 18 years of attending conferences, organizing and speaking at Lyme conferences, as well as engaging with other professionals on-line on a daily basis, has continued my education into the complexities of the disease.  But what is most shocking and troubling to me is the arrogance and ignorance of those who deny Lyme and co-infections, who demean and insult patients, families, and treating physicians.

Let’s look at those core issues that I mentioned, as they relate to Lyme patients.  Safety and protection mean that extended family members and friends learn about the illness of their loved-one, and provide support and encouragement, instead of demeaning the medical choices the family has made for treatment, something that unfortunately goes on all too often. They would never do that if their loved one had cancer.

Safety and protection mean that schools take the time to learn about the complex symptoms children with Lyme manifest, the impairments in areas that involve physical functioning, changes in mood, cognition and executive functioning, and that the schools respectfully provide them with the understanding, support, and accommodations that will help them succeed in the academic environment.  Unfortunately, many schools around the country deny help to kids with Lyme.  The schools would never question the diagnosis or treatment of a child with cancer or deny them support.

Safety and protection mean that physicians who provide ancillary care, whether it be in the ER or the primary care physician, will respect the family’s choice of a Lyme specialist, and give them the respect they would give them if the patient were battling cancer.  Instead, patients are routinely harassed by Lyme-denying physicians who are not open to learning about Lyme in its chronic form.

Then there are the legal venues, in which safety and protection are often denied.

Safety and protection mean that a family whose child is too ill to attend school, and which is pursuing treatment from a Lyme specialist will not be reported for child abuse or neglect for making that choice.  It means that patients will not lose their doctor’s ability to treat them because the doctor has been brought before their state medical board on charges for treating Lyme disease in a comprehensive manner.

These past 18 years have shown me that Lyme patients often find themselves walking through a mine field.  As if the illness itself is not enough, the denial of chronic Lyme and co-infections, the denial of the severity of the symptoms in patients, has caused many to become distrustful of the outside world.  And, sadly, this distrust is, in all too many cases, warranted.

For more information about Sandy Berenbaum, visit her website, www.familyconnectionscenterforcounseling.com.