Your 20s are supposed to be the best years of your life, or at least that’s what all those episodes of “Friends” taught me. It looked a little different for me. When I was 20 years old, I had a cluster of blood vessels (called an arteriovenous malformation) in my brain which caused a stroke. Five years later, I was diagnosed with epilepsy. Don’t these kinds of things happen to other people? I thought, but thanks to “winning” the genetic lottery, my life took a major detour.
Through trial and error (mostly error), I’ve figured out different ways to navigate the challenges of living with my chronic condition. While sometimes it’s hard enough to make it through the day, I’ve found hope and stability identifying support networks and accepting where I am in the process of my health journey.
Accept that time is out of your control
When I was first diagnosed, I’d been having seizures for a while. Even so, when my doctor told me I had epilepsy, I was shocked. And when I found out my heart stops when I have a seizure, I was terrified. I took time to digest everything, and reckon with the additional limits on my freedom, and possibly on my life.
A diagnosis can mean understanding certain risks that could kill you or eat up your time and energy. This is referred to as the “Spoon Theory.” Every day, I try to make use of whatever time I have. I wake up early before work to write for an hour when I have the most brain power. By the end of the day, I don’t have the “spoons” for that kind of cognitive work. I’m really thankful for every minute I have energy every day. This experience is sad and hard, but it also can teach you that time, even if limited, is a gift.
Learn to communicate your boundaries
Figuring out who you can trust to be there when you need them can be difficult regardless of whether they are your family or your friends. Even when I knew who I could rely on, they still didn’t necessarily know how I wanted to be supported.
I’ve learned I need to understand my own boundaries so I can communicate them. A few months ago, I had to ask my parents to embrace silence in the doctor’s waiting room, because I use that time to temper my nervous energy and list out the topics I want to cover with my doctor. This was not an easy conversation, but it was an important one. Now, my parents better understand what puts me at ease when waiting to see a doctor.
Seek out social services and support groups
Most cities have several different organizations to support people with chronic illnesses or disabilities. This can be a more generalized disability organization, or condition-specific group. I’ve connected with the local Brain Injury Association, which, like many disability organizations, offers a support group for younger folks living with a medical condition, because conditions have totally different implications for the future when you’ve barely entered adulthood. I’ve attended their support groups, and as a result, they have advocated for me personally to get into a vocational training program.
Find/turn to a spiritual community
Priests, deacons, and nuns are all engaged in the health and well-being of their communities, and that includes spiritual health — especially in a time of crisis. My priest has visited me in the hospital and prayed with me. It wasn’t originally my idea; my dad is a spiritual care provider at a hospital and suggested I reach out to a member of the local clergy. It seemed a little weird at first to ask for that kind of support, but I’m so glad and grateful I did because it calmed my fears at times of uncertainty, especially when I was under hospital observation for my seizures.
Be generous with yourself and your feelings
One of the hardest things for me to learn is that it is okay to have emotional responses to things. Sometimes I feel guilty for having “bad” feelings like sadness, anger or lethargy, but these are natural human responses to life, and I am not weak for having them, and I need to make space for them.
Chronic illness and disability sucks. It does. My situation is incredibly sad and frustrating, especially when I had so many plans for my life. I have, however, found friends with the same frustrations, and sharing them has helped me understand where I have been, and where I am going.
I tell them what I keep telling myself:
You don’t need to be positive right away, you just need to be. That’s enough to start.