Children and teens with CFS have many of the same issues as other children with chronic illnesses, confounded by the fact that they have an illness which is poorly understood, often misunderstood, and too often misdiagnosed. And what do we tend to do when we don’t understand an illness? We tend to deny it, ignore it, and accuse the sufferer of malingering. My son Brian once said that “I wish I had an illness like cancer or diabetes instead that people could easily understand and that I wouldn’t have to constantly explain”.

We also have to remember that kids have a full-time job: school. This is not just where they are working on their education, but where most of their opportunities for social interaction and even extra-curricular activities occur. School-age kids need to socialize; school is usually the foundation for those social interactions. Children and teens with CFS can easily become isolated, especially if they have prolonged periods of school absence and if their friendships are based around group activities such as sports. It was important to us to let all of Brian’s friends (and their parents) know that Brian’s illness was not contagious, that he welcomed visitors, and we had an open-door policy for parents who needed a place for their kids to come hang out. To facilitate this, I made sure to serve the best snacks in town (even when Brian had no appetite).

While students with CFS may qualify for special services under the Individuals with Disabilities Education Act (IDEA) and/or Section 504 of the Rehabilitation Act, it is often difficult to obtain these services, especially if the exacerbations of the illness are inconsistent. In most cases, parents must go through the process of obtaining an Individual Educational Plan (IEP) for affected children and the school must provide reasonable accommodations including home tutoring if necessary. This process takes time and persistence. And even once a plan is in place, it may be difficult to schedule home tutoring for a child with unpredictable sleep needs and energy cycles as well as numerous doctors’ and physical therapy appointments.

The issues of how difficult this process is for the parents goes way beyond the scope of space I have for this entry! Suffice it to say that caring for a child with a chronic illness affects the entire family: emotionally, financially, and in every other possible way. If both parents are employed outside the home, flexible child-care arrangements must be made, in addition to home-schooling arrangements. This, alone, can be a tremendous hurdle.

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• Treatment of CFS ›