Living with Chronic Illness

My name is Sprout and I am 20-years-old. This is the story of how chronic illness turned my world upside-down.

Before I Got Sick

This is a photo of me right before I turned 19. I had just moved to LA to pursue my modeling career while taking community college classes with the hope of eventually transferring to UCLA. At this time, I had hopes of going to law school and someday running a non-profit. I booked my first international job and finally felt like my life was going somewhere. About a month after I turned 19 I had my first seizure.

Suddenly, my life turned into a jumble of doctor appointments and testing. I went to probably five different doctors in Los Angeles who all told me different things. One person thought I had had a stroke. Another thought I was having heart problems. Another thought my symptoms were just anxiety. I was tested for Lupus, Zika, Multiple Sclerosis, etc. Eventually, MRIs and a CT determined that I had multiple cysts in my sinuses and brain. By this point, one of the cysts on my sinus and started corroding through the bones near my eyes, causing me to lose vision in my left eye.

In August, I went in for surgery to have the cysts removed. The hope was that this would stop my seizures and bring back my vision.

Post Surgery

After my surgery, I woke up with my vision fully restored. However, my seizures didn't stop. I was shuffled around between doctors and essentially told to just live my life and hope the seizures would stop. I stopped taking modeling jobs and switched to going school only half time. I could no longer drive or exercise. I had seizures every day, sometimes I would have 5 seizures a night. All of my EEG results were coming out normal which baffled my doctors.

Finally in January of 2018, I was admitted for a continuous EEG study at a hospital in Oregon. The neurologists determined that I had something called PNES (psychogenic non-epileptic seizures). These types of seizures are often brought on by PTSD and a history of severe anxiety. Essentially the brain doesn't know how to handle stress and sends the body a signal to have a seizure. Most PNES patients are incorrectly diagnosed because the symptoms are so similar to epilepsy. One huge difference is that PNES cannot be treated with medication. So, I finally had a diagnosis, but I didn't have a treatment plan.

I came back to LA to try any and all new treatments for my disease. It has been 10 months since my diagnosis and I still have seizures every day. I have had to make a lot of lifestyle changes. I have to rely heavily on other people which is difficult when I'm at an age that is normally associated with newfound independence and freedom. While, I don't know if I will ever be seizure free, I am not giving up. As difficult as it has been, I have been able to make adjustments that allow me to still live an incredibly full and rewarding life.

I have learned the importance of taking advantage of the good days, and holding on to hope during the bad days. I have grown a new appreciation for my body, even though it attacks me sometimes. The people in my life have lifted me up and supported me in ways I didn't know were possible.

My dream of being a lawyer no longer seems attainable, but I have found a new sense of purpose in raising awareness for my illness and others who suffer silently.

If you live with a chronic disease of illness, know that you aren't alone. Everything you feel is valid, and there are people on your side.

If you love someone who is suffering from a chronic illness, validate their feelings! Make sure they know they are supported and loved. Advocate for them when possible.

As for me, I am going to just keep trying to live my life as healthily as possible. Hopefully the day will come where I am seizure free. For now, I am just doing the best I can with the cards I have been dealt.