My Neurodivergent, Invisible Illness

By Lisa Hayes

On Sunday, December 6, 2015 I woke up with a swollen tongue and a sore mouth.      I was exhausted even though I had slept that past night and for some reason I had soaked the covers on the bed. I didn’t feel well that day but when you have three boys you don’t get much down time.

Two days later, it happened again. My husband said to me “I think you had a seizure.” 

An appointment later that day confirmed what my husband had suspected. A seizure disorder. Epilepsy. Levetiracetam, 500 MG, twice a day. No driving, for Six Months. What was I to do? I drove three boys EVERYWHERE!

After that I was given the task of finding a neurologist to treat my disease. At the time that was not an easy task because there were barely a handful in the St. Louis area. I found one about an hour away, he would see me the following March.

On the day of the appointment we discussed my symptoms, my need for an MRI and the joy of having an EKG. Both tests came back inconclusive but as a woman in my 40’s possible causes included:

Stress 

Hormones 

A head injury

I was also told it was rather common for women my age to have seizures though hearing this did nothing to soothe my longing for an answer. I was told that for the time being I could not drive, not up the street to the school the boys attended, not to the grocery store, no where. The good news was, however, that instead of waiting six months to drive, I only had to wait three. If I remained seizure free until March 6, 2015, I would gain driving privileges again. 

To this day I have remained seizure free and on medication. I taught my oldest what to do to stop the car if I started to seize while I was driving and he took it in stride. Thank goodness he never had to put those skills to the test. Two years ago a young neurologist opened an office closer to home so I switched care to him– I was spending more time driving to St. Louis and back then I was actually spending seeing the doctor or the PA. 

My reflexes are tested once a year and I walk on my tiptoes in a straight line. My disability is invisible unless I disclose it though I don’t consider it a disability, just something I will live with for the rest of my life. The only time I choose to disclose that I have an invisible illness is when I’m at the doctor filling out forms or when they go through my medical chart during a check-up. 

I did disclose it on a form while I was working in the classroom at a nearby school. The nurse passed out emergency contact forms and on it was a section that talked about illness and who to contact if there happened to be an emergency. I never had to use that contact but I often wondered if my illness was one of the reasons I was released from my employment last August.

In conclusion, when it comes to your own invisible illness it’s up to you to decide who to tell. Honestly, however, it isn’t the business of an adversary to dictate how you live your life. Be proud of who you are and don’t ever let the opinion of someone else get you down.