Being diagnosed with a chronic illness is a life changing experience. It becomes a matter of adjustment and adaptation. It becomes a matter of limitation and certain sacrifices. Undertakings to move forward in the direction of a brand-new fulfilling life.
Below is a list of 7 things that I learned are okay to do while living with epilepsy:
Talk about epilepsy –
Talking about epilepsy is both therapeutic and engaging. Following my diagnosis, I found myself feeling frightened and alone. Neither family or friends had any history or knowledge of the condition. It wasn’t until I leveraged social media to connect with others who were like me. Online support groups and communities helped me to not only cope, but to heal. Ultimately inspiring me to become an advocate for epilepsy awareness.
Resting is not laziness, it’s medicine! A seizure can sometimes leave me feeling very exhausted. Comparable to a cell phone battery in the red. My entire body has just experienced a stressful event and I lack the physical and mental strength to do anything. Resting helps me to recharge and recuperate.
Cancel plans –
Unfortunately having to cancel plans comes with the territory of living with a chronic illness. Seizures are unpredictable and can happen at any time. When I’m invited to an event or social gathering, sometimes I have to back out because I feel symptoms looming or have just experienced a seizure. It’s one of the most unpleasant “side effects” but I’m thankful that others console me in the fact that they understand.
Break up with coffee –
It’s safe to say, we live in a coffee culture, where many people have come to rely on coffee to ‘get going’ or ‘keep going’ for the day. I used to enjoy coffee very much. I probably drank 1-2 average-sized cups of coffee a day, even after I was diagnosed with epilepsy. As much as I loved coffee, I would come to learn that caffeine doesn’t necessarily love me. It began triggering my seizures. So I switched from caffeinated to decaffeinated beverages.
Ask for help –
Reaching out to someone for assistance isn’t a sign of weakness. Everyone needs a bit of help sometime.
At first, I felt awkward, uncomfortable, and embarrassed. “A grown adult unable to do some of the simplest tasks”, I thought. Not asking for help was holding me back and wasn’t providing answers to questions that people had in how they could best support me, so I needed to embrace the discomfort I faced.
Asking for help has since strengthened relationships with the people in my life.
Set boundaries –
Setting boundaries isn’t selfish, unkind, mean, or aggressive – it’s self-care. We’re taking care of ourselves. After I was diagnosed, I needed to recognize and respect my limitations if I wanted to avoid having a seizure.
Getting comfortable saying “no” and retiring my “people pleaser” behavior took practice. I didn’t want to “burn bridges” or “close doors” and I prayed that those in my life never assumed this was my intention, but it was crucial that I did my best to avoid circumstances that could be seizure triggers.
Have fun –
It’s okay to have fun and enjoy life as fully as you can, despite dealing with something as unpleasant as a chronic illness. Planning ahead and minding limitations is the best way to ensure that can be achieved.
Just because I live with epilepsy and sometimes have struggles, doesn’t mean life is over. On my good days, I’m able to take part in activities that I enjoy and try new things. In a safe manner, of course. I’ve encountered situations in which some people have witnessed me enjoying an activity and then call my illness into question, however rather than being upset, I’m reminded that they lack understanding and this presents an opportunity to educate and eradicate stigmas.
What have you learned that is okay to do?