How do you cope with a debilitating and invisible chronic illness?
How do you cope with having a debilitating invisible chronic illness, like Gastroparesis? When I was first diagnosed with Gastroparesis, I honestly didn’t know how to feel. It was like I was on a rollercoaster of emotions - accepting one day, and completely confused the next. I later came to the realization that those feelings are completely normal.
Gastroparesis is a condition in which the stomach cannot empty itself in a normal fashion and, basically, the stomach is paralyzed and doesn’t contract normally. I knew this diagnosis would be something that would change my life in multiple ways, but during my journey I have learned that staying strong and having faith are some of the most important steps to coping with my diagnosis. A disease like Gastroparesis requires learning the balance between surrendering and fighting, even if people may not know you are in a constant battle.
Of course I have days that aren’t the best, but I am actually kind of grateful for being in those situations. While experiencing the low days, I’ve had the opportunity to perceive what my purpose is in life and learn how I can use my purpose to help others going through similar situations. Speaking out to other children with chronic illnesses, connecting with them and teaching them that there is nothing wrong with having an illness is something that has allowed me to get my voice out and help comfort other patients. Making others smile is just one reward I have gained from experiencing multiple levels of adversity.
Allowing children and teens to express their feelings and emotions is a very crucial part of their current state. The best way to express one’s feelings is to talk about them and share them with someone. This keeps us from getting caught up in our own thoughts and falling into a miserable state of mind. I can personally say that the Child Life Specialists at Arnold Palmer Hospital have definitely allowed me to speak freely about my feelings and emotions without any judgment. I honestly don’t think any hospital stay is ideal without the Child Life Specialists. Sometimes I get caught up in the moment and think about how bad my situation is but the Child Life Specialists have always been able to distract me from those thoughts and allow me to smile and have a bright outlook on life.
Journaling is another activity I have been taking part of to help cope and release some stress. I am able see what challenges I have faced and when they took place, which allows me to reflect on how my life is in the present moment compared to the past. I never thought I would feel so comforted by just writing my feelings on paper, but to my surprise it has helped me more than I ever imagined.
When not in the hospital, living with an invisible chronic illness is one of the hardest things I have ever encountered. Sometimes I may look perfectly fine on the outside, but under my shirt and under my skin there is excruciating pain and all types of tubes. I’ve come to learn that I am my own kind of beautiful and no one can take that away from me. I always try to express that point to other ill patients because it’s very important that they embrace who they are and feel content in their own skin. No matter what challenges I may be presented with I always try to keep a positive attitude and stand firm in strength. One of my favorite quotes is “She is clothed in strength and dignity and she laughs without fear of the future”. Being told countless times that my pain can’t be controlled or that I’m my doctor’s most complicated patient can be very frustrating at times. I always tell myself that the harder the punches the longer the testimony. I am a victim of an invisible chronic illness that has permitted me to discover not only my purpose in life but also how much internal growth I have encountered during my journey. I love the person I’ve become because I fought to become her.
The truth about chronic illness is that it’s always a part of your life regardless of how you are feeling. Even on your best day, it’s lurking in the shadows, ready to strike at any moment. I’ve come to the conclusion that I was given this life because I am strong enough to live it. I may have Gastroparesis, but Gastroparesis doesn’t have me!