Often, I reflect back on times that I would tell others that they would never understand what I was going through because they were not living with my epilepsy. Many of us living with a chronic illness sometimes say or think things in frustration and hurt unintentionally.
However, there is so much that family and friends can learn from someone living with a chronic illness that can give them guidance in how they can help us and even help themselves in their daily lives.
“There’s always something to be gained from difficult times. Even if it’s not your own. Life lessons to carry with you forever. – Tiffany Kairos”
Living with a chronic illness means practicing patience. It’s a full time job on top of the one we already have.
- Hospital appointments
- Take medications
- Refill medications
- Pick up medications
- Drop off prescriptions
- Symptoms and side effects
- Seizure recovery
- Epilepsy exams and tests
- Battles with insurance
- Hospital stays
- Manage painful emotions e.g. depression, stress, anxiety and sometimes hopelessness
By practicing patience, you become better at making decisions. Patience gives you breathing space and therefore you’re more comfortable with taking the time to assess difficult situations and reflect on how you want to move forward.
There are circumstances and situations in life that are beyond our control, such as a chronic illness. We have to learn to accept our new reality. That in itself is a full time job. Acceptance doesn’t happen overnight and it’s not an orderly, linear process. When diagnosed with a chronic illness, we can go through different emotional stages, kind of like grieving.
- Unbelief and denial
- Anger and frustration
- Bargaining and depression
Constantly focusing on your limitations, and sadness only causes bitterness and inner turmoil. Accepting things as they are, on the other hand, can help you lead a happy and meaningful life despite difficult circumstances.
Living with a chronic illness means adapting to a new way of living life. It means making regular, sometimes tough choices about your care. Every decision we make is a full time job.
- Establish alternative financial means
- Secure other means of transportation (The Road Doesn’t End Here)
- Establish grocery delivery services (The 13 Best Grocery Delivery Services of 2020 – Healthline)
- Create a daily routine centered around epilepsy wellness e.g. physical activity, structured sleep schedule, nutritious meal prep or planning.
After my diagnosis, I had a lot to learn. It was overwhelming at first but as time progressed, I began to enjoy the discovery and journey of a new path to living my best life.
Time management is life management. Especially living with a chronic illness. It helps to reduce long-term stress by giving you direction when your plate is full. Managing daily life is one job. A chronic illness on top adds a whole other level.
“When you operate your life in a healthy, organized fashion, and are able to execute daily tasks efficiently, stress is reduced, productivity increases and overall satisfaction surges.” – Phil Mora
- Take medications on time
- Arrive to appointments in-person and/or virtually on time
- Refill prescriptions on time
- Pick up prescriptions on time
- Refill pill organizer on time
When you’ve just received bad news or are dealing with a difficult circumstance like a chronic illness, it can be challenging to feel grateful for what you have. It’s a full time job of tossing out toxic thoughts and cultivating gratitude.
- Even the littlest of things
- Even when you don’t want to
- Even when things don’t go as planned
- Even when you are struggling
I shunned and struggled to find anything to be grateful for after my epilepsy diagnosis.
“Practicing gratitude helps us to widen our perspective and look at things more broadly, and increases our positivity and well-being.” – Michelle P. Maidenberg Ph.D., MPH, LCSW-R, CGP
It’s a full time job trying to co-exist with a difficult circumstance, like a chronic illness. Yet, we persevere by keeping the faith and by putting one foot in front of the other. Even if it’s a slow process. Step by step, inch by inch we will get there.
- Persevere through undesired routines and regimens e.g. Dr. visits and taking medications daily
- Persevere through limitations e.g. transportation or ability to work
- Persevere through feeling different than others without a chronic illness e.g. dealing with insecurities
A healthy individual is capable of caring for themselves without the assistance of someone else. Even in difficult situations. When a tragedy or life-changing event happens such as a chronic illness, it’s a full time job for some people to manage their emotions having once been independent. Being in a place of vulnerability where you rely on the expertise and assistance of family and friends.
- A ride to the store
- A ride to the doctor
- A ride to the ER
- A ride to a social gathering
- A visit to hang out and keep in touch
- Help during a seizure
- Help after a seizure
- Help around the house
- Help with breakfast, lunch and/or dinner
- Help with the kids
Cultivating humility opens our eyes to see that we can all use a little help from time-to-time. Asking for help doesn’t make us weak, it makes us human. This is not only okay, but beautiful.
Having grit means having the determination to “stick to your guns” despite setbacks, challenges and failures. You persevere. Just like a boxer who gets knocked down over and over again. Because of their grit, they keep getting back up to stand their ground. You set goals and you follow through. For those of us with a chronic illness, that can mean taking our medicine on time and with consistency. Even when you don’t want to, and still hitting the gym for a solid workout for example.
- Despite seizure setbacks
- Despite unanticipated news from the doctor
- Despite the struggle to manage seizures
- Despite unwarranted thoughts and opinions from others
It’s necessary not just to survive…but to thrive! Learning helps us grow as individuals, whether it is expanding our views, values, or knowledge. We are learning something new each day. Whether from situations we experience first-hand or witness.