How to cope with epilepsy when it brings uncertainty to day-to-day life.
Too many with chronic illness constantly feel that they are just getting by. We have jobs, families and daily responsibilities, and oftentimes our days end with us feeling physically and emotionally exhausted. And if you don’t live day-to-day with a chronic illness, it is hard to grasp how hard life is with one, two or more of them.
Just Imagine the Uncertainty
Chronic illness brings with it uncertainty, and to understand that, you would have to imagine being sick every day for the rest of your life. Imagine having to live day-to-day feeling like you are not in control of your life as you try to do your job and care for loved ones. Now, pretend that good health equals happiness and imagine living in a world where your chance of being happy is only 50%. Sure, 50% might sound good but when you reach that 50%, you still want more and you chase after that happiness even though it is impossible to reach. You wish every day that you could be just as happy as your friends and family but that will never happen because your life also involves fear, anxiety and worry.
An Invisible Monster
Living with a chronic illness can feel like an invisible monster following you around. The rest of the world can’t see that monster but you can feel it breathing down your neck every minute of every day. You may look neat, well-dressed, smiling, healthy and working like everyone else. But that monster is what divides you from your healthy peers.
It is hard to explain your symptoms and feelings to people who don’t understand what chronic illness is like, and even when you do, you wonder if others validate those feelings. For example, if you share with your supervisor or co-worker that you are chronically ill and they don’t care enough or understand why you are always sick when you don’t look sick, it can be upsetting and frustrating. And if anyone questions you directly about your physical symptoms, the words don’t always come easily because you fear judgment.
We Are Just Trying
While it seems like we have it together the majority of the time, more often than not we are just getting by. We continually feel pressured to prove that we are capable, but are worn out from trying so hard. We are trying to feel less guilty and more useful. We are just getting by, and for some unknown reason we feel the need to overcompensate because we were unfortunate enough to get sick. We didn’t choose this life; it chose us. But it doesn’t change the fact that we have been taught that being sick, or at least showing it, is unacceptable and even a sign of weakness. So, we try our best and we try harder than our healthy coworkers, friends, and family.
Changing Thinking to Live Life Fully
If you want to live life fully and not just get by, it is your responsibility to change your thinking about living with chronic illness. Here is how.
Focus on Self-Management. Self-management of your chronic illness goes beyond treating your disease. It involves finding better ways to limit the impact of illness on your life while managing symptoms. Only your doctor can prescribe your medications, but the role you play is just as important. Self-management involves maintaining a healthy outlook, finding support, taking medications as prescribed, being active and eating healthy. Moreover, it is important to recognize and manage stress and engage in healthy sleep habits.
Manage Grief. Chronic illness involves healthy grieving. Sometimes, however, intense emotional pain can be destructive. Sleep issues, loss of appetite, loss of interest in activities previously enjoyed, intense sadness and suicidal thoughts are all signs of depression. Talk to your doctor about medication and therapy. And don’t face difficult emotions alone. Communicate your needs to family and friends and ask for and accept help. Join a support group and be open to sharing your struggles with others.
Face the Future. People with chronic illness have years of health worries ahead of them. While chronic illness is here for the long-term, there is no reason why you cannot look to the future with ambition, hope and a positive attitude. Your disease may affect your body but you have free will over your mind and spirit. You can live your life, dream, and face the future in any way you please.
Don’t Just Get By
There is no reason for people with chronic illness to just get by. Self-management, dealing with grief and facing the future are just a few ideas to help you get started towards a full, thriving life. Give up your old pressures and imagine a new way of doing and seeing things. Choose to thrive in ways that are creative and provide opportunities for you to live life to its fullest.