If you are a teenager struggling with epilepsy, or you have a sibling, close friend or a parent diagnosed with this disorder, this information is for you. I am specifically zeroing in on teenagers for two reasons:

  1. Teenagers are a lot smarter than their parents give them credit for and;
  2. They tend to tune out their parents due to the perfectly healthy need to feel independent.
    Who the heck wants their parents hovering over them worrying about what might happen next?

I have some familiarity with this subject because I too was diagnosed with epilepsy when I was 17 and even at 53 have to live with the illness. Like so many chronic diseases, epilepsy is not a one size fits all condition.

Epilepsy is a group of related disorders characterized by a tendency for recurrent seizures. Seizures are episodes of unusual brain activity that cause changes in attention or behavior. There are several different kinds of seizures with symptoms varying from person to person. For more specific information you can access the www.epilepsyfoundation.org website, Web MD under epilepsy, your personal neurologist and other resources. Don’t be shy about asking a lot of questions and doing research! No questions are silly.

Some seizures are so minor they are almost unseen and others result in a complete loss of consciousness for a period of time. My own neurologist describes it “as sticking your fingers into an electrical socket and experiencing a resulting shock.”

It often takes quite a while before the right medication or medications are found to control the illness. With some folks, control is difficult to achieve. In others, surgery has been able to help. Unfortunately there is no single solution and this uncertainty can leave you frustrated, depressed and sometimes hopeless. These feelings are quite normal. So what do you do about them? Not running away from your feelings will help even if they are confusing.

Finding someone to talk to who understands your situation is better alternative. Figuring out what you do have control over is another. Following your Doctor’s orders could prove to be helpful. This includes taking your medication as directed. Ask your friends about setting medication alarms on your cell phones. It’s actually kind of fun.

Like most teens you want to feel like you fit in with your peers and epilepsy can make you feel just the opposite. How do you see your future? Are you questioning whether you can have goals such as going to school or college, having a boyfriend or girlfriend, or even children? Will you ever be able to have any control over your situation? I can tell you that, for starters, standing up for yourself is essential.

What frustrates you the most about your parents or other adults? Do you feel that they are overinvolved in your day to day activities and that they limit you? Let’s walk a mile in their shoes. Parents with children who have chronic illnesses naturally want to protect their children from the results of potential accidents due to seizures and from anything else they can’t predict.

Unfortunately adolescence is the one time when it is difficult for a parent to have influence over you. This creates tension that is difficult to smooth over. You likely want and even need your independence. In this case it might be helpful to have someone moderate a conversation or two with you and your parents so you can see each other’s perspectives.

Parents mistakenly believe they have control over their children’s lives. To some extent good choices may decrease negative results; for example if you are good about taking your medications you could have fewer seizures. However, bad things (and good things too) can happen without intervention from other family members.

I was very fortunate in that my parents allowed me to go to a University 6000 miles away from home after I had been diagnosed with “grand mal” (or tonic clonic) seizures. I know today this was an extremely difficult decision for them to make. And while the transition due to the medication, the chronicity of the illness, and the distance made the first year of college very difficult, it also taught me numerous coping skills. As a result, I began learning how to advocate for myself in the doctor’s office, taking the right medication and learning how to interact in completely new social settings. There were unexpected side effects. These included some depression from the medication and frustration over not being able to drive.

It took time to realize that I had to create my own place in the world. Even today, I have to accommodate myself to the changes that the disease brings me. Usually (when I am not rolling my eyes or pouting), I try to look at my seizures like challenges to overcome. I try to sort out what I have control over. In this area there are some very specific things; for example, I don’t drink alcohol. Alcohol has a deleterious effect on medication and on epilepsy. I exercise and eat healthy. I sleep regular hours and minimize my stress level. But the seizures themselves rear their heads whether I want them to or not and then all I have is the ability to respond afterwards. I realize now that it takes about 3-4 weeks after an episode to feel like my life is my own again.

To answer the questions from earlier, in many cases, a person with a seizure disorder can have a normal life. Some can go to college, can get married, many have children, have careers and engage in hobbies. It is true that you may not be able to jump out of an airplane, swim alone or perhaps even drive. But that doesn’t mean you can’t be completely content.

Sometimes it is easier to identify with a real human being. In my case I am married, I have a grown daughter, two fur-children a previous career working with abused kids and am now embarking on a second career as a marriage and family therapist. I was able to obtain my bachelor’s and master’s degrees along with a marriage and family license in the state of California.

Yes I have had to make allowances. Sometimes I’m scared, sometimes angry, and sometimes depressed. I always know these emotional states are temporary because I have seen myself cycle through them. By and large I consider myself happy, successful and hopeful for the future.

You can be too..