TOUCHED BY LYME: When teenagers have Lyme disease

8th February 2009

Dealing with Lyme disease and other tick-borne infections is a miserable ordeal at any age, but it offers unique challenges when the person going through it is a teenager.

Dealing with Lyme disease and other tick-borne infections is a miserable ordeal at any age, but it offers unique challenges when the person going through it is a teenager.

One person who knows all about it first-hand is 18-year-old  Makayla Berndt, founder of an on-line support group for teens with Lyme. I asked if she thinks teens with Lyme face different problems than people in other age groups:

Dealing with Lyme in your teen years definitely is tricky and extremely hard. Teenagers without Lyme in the equation are already dealing with high school and making decisions about college. They’re dealing with relationships and dating, and meeting new people. And then there is learning to drive and getting their first job. All those things are stressful on a normal person, but adding Lyme into the mix makes things extremely difficult.


We have to make decisions on our education… whether or not we can handle school during treatment, and if we can’t then there’s the devastation of being left behind and everyone around you going forward.  And then for those of us who feel they can handle some school, they have to make the decisions on the best program for going to school. Homeschooling, online classes, half day at school, etc. We also have to figure out if our friends are going stay by us and support us or dump us off to the side. Unfortunately most teens have no clue on how to deal with someone who is sick with a chronic illness and therefore just abandon that person. Teens with Lyme also miss out on a lot of their high school experiences, such as homecoming, football games, prom and graduation.


I know that everyone with Lyme goes through the aggravating stage of doctors saying it’s all in your head. But with teens, a lot of doctors act as if we are faking it because we don’t want to go to school, or that we want attention.

It’s also really hard because as teens battling Lyme and co infections…we depend on our parents so much for everything, yet we yearn for the independence that being sick doesn’t bring. Also, we see how much everything costs, which makes us want to help somehow with the cost of treatment and appointments…especially when we see our families working so hard to get us the treatment we need.

I asked her why she started the teen yahoo group, which currently has about two dozen members from across the U.S.

When I was first diagnosed, I remember going online and searching for people my age that understood what I was going through. I came across a few online groups, but found there was little to no activity on them….I felt the need for a place where teens can talk, be safe, have fun, and of course get support.


What have you learned from participating in this group?

I have learned of other people’s journeys, and their fight against this disease. And, how every person here is such a trooper, they just keep fighting. I find it great that when someone in the group is down and having a rough time…there are always people to nudge that person, and let them know that they are there for them. I have also learned about treatments that have helped others in the group.

Click here for information about joining this group.

In an effort to address the needs of teenagers facing Lyme disease, the California Lyme Disease Association will offer a special session for teens as part of its patient conference in San Ramon on April 18. The teen workshop, facilitated by Valerie Frankel, MFT, will be a chance for teens to meet other teens dealing with Lyme, and to explore strategies for the coping with the challenges unique to teenagers with chronic illness.


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