Elaine, along with her frenemy, is a first-year student at Muhlenberg College in Allentown, PA. Marsha Raines, L.M.S.W., is happily married to Steven Gersz, Esq., and is the very proud mother of Jess, Lawrence, and Elaine.
A DAUGHTER'S PERSPECTIVE, BY ELAINE
You know that one friend: the annoying, obnoxious, loud one who—despite all your signals—just doesn't understand that you don't want to spend time with her? I have one of those. I met her when I was 12 years old. Back then, she only visited once or twice a month. By the time I started high school, she was always with me. Her name is chronic daily headache.
She is what you might call a frenemy. I hate the way she has taken up residence in my head, behind my right eye—stabbing, throbbing, and aching. She has made me miss parties, vacations, and movies.
Determined to evict her, my parents and I have traveled to many headache clinics. I have spent school breaks in the hospital trying different treatments.
My frenemy may have barged her way into my life, but I am determined not to let her take over! I have slowly learned how to live with chronic pain. On some days, she makes me want to scream and cry. So, on the days when she doesn't bother me as much, I do all the homework I can. I have become an expert in time management.
I have also learned how to advocate for myself at school. I don't want my teachers' pity, but sometimes I can't attend class or get an assignment done as quickly as I would like. It's better to educate my teachers about my medical condition than to try and hide it. Together, we developed a plan so that if I am experiencing acute pain, I can postpone taking a test.
Yes, I have had to stop some of the activities I love. The rigorous schedule and exercise of being on the basketball team was too much. But I chose another activity that I can do at my own pace. Now, on days when my frenemy is quiet, you can find me snowboarding.
One day, I hope to have the power to evict my frenemy. For now, I have learned to accept her just the way she is.
A MOM'S PERSPECTIVE, BY MARSHA
Too many adolescents with serious headache disorders suffer in silence, not wanting to feel the stigma associated with having a headache that never resolves.
At first, we were sure a cure was out there. We consulted with nationally recognized headache specialists. Elaine participated in three inpatient hospital programs and tried several alternative therapies.
Parenting an adolescent with chronic pain can be a frustrating and painful journey. But we learned a lot along the way—most importantly, that chronic daily migraine is a real neurologic condition. It is not “just a headache.” No cure exists, but treatments can help alleviate the pain some of the time. Don't give up, and don't be timid about finding the best care for your child. Although Elaine has not found an effective treatment yet, we are still searching and hopeful.
Teenagers with chronic daily headache often feel self-conscious about it. Friends and teachers cannot see their pain. Help your teen educate others and create a personalized school plan with teachers to accommodate this disability.
Establish a relationship with a neurologist who specializes in headache. Our family's hero is Dr. Joseph Mann. He has devoted countless hours to helping Elaine navigate new medications, specialists, and alternative treatments. Dr. Mann made himself available for after-hours treatments that allowed Elaine to get through exams and attend prom.
Do not let the headache define your child. Encourage your teen to focus on their strengths—whether academic, athletic, or artistic.
Finally, understand that chronic pain affects every member of your family. A good therapist who specializes in chronic pain issues can be an invaluable resource.