6 Things No One Told Me to Expect About Having Chronic Illness

All my life I’ve lived with a chronic gastrointestinal (stomach) disease. As the years have progressed, my digestive system has slowly become paralyzed. Currently I’m unable to eat food. I receive all my nutrition and hydration through a small port in my chest. It’s my lifeline and the one thing keeping me alive.

As I’ve progressed through this disease, I’ve come to learn many different things, things no one told me to expect. Things that have shocked me and shaken me to my core. But I’ve grown stronger as a person because of these things, and they’re the reason I am who I am now. I want to share some of them with you, in case you’re also struggling with a chronic disease, so you can hopefully use the information to better your life.

1. I’ve had good days, bad days and downright horrible days.

I know everyone says there will be good days and bad days, but they tend to leave out the simple fact that there will also be downright horrible days. There are days when I think it can’t get any worse, but then it does and I’m left feeling betrayed. But the thing to remember is that after the storm comes the beauty. There’s nothing like the fresh smell of the air after it has rained, but I have to pass through the storm to experience it. However, I must also learn to dance in the rain, and that takes a great deal of strength, but it can also be surprisingly refreshing. I won’t let those downright horrible days keep me from living my life.

2. I’ve learned who my true friends are.

I’ve had many people tell me that no matter what happens to me, they’ll stick by my side. Yet a few months will go by and I’ll stop hearing from them, and there isn’t a response when I try to initiate contact. While I’m hurt by their actions, I know they’re ultimately trying to protect themselves. They begin to realize how critical my situation is and they distance themselves to prevent the pain they may experience from becoming emotionally invested in my life. It’s a harsh reality, but a reality nonetheless. So I let them go, and I’ve learned the true value of my friends who remain by my side through it all.

3. My family is priceless.

In high school my family was not one of my priorities. I didn’t value them or my relationship with them like I should have. As I got sicker, I learned the true value of family. They were the ones who never let me spend a day alone in the hospital. They loved me through my anger, fear and joy. So instead of turning from my family during your struggle, I’ve embraced them, and they’ve played a critical role in keeping my spirits up.

4. I’ve experienced depression and dark thoughts.

I believe it’s not abnormal to have those thoughts. I’m fighting a battle for my life and sometimes that battle isn’t easy. I know for me I’d rather go to heaven, where I believe there isn’t any pain or suffering, but I continue to fight because I never know what I might miss out on if I choose to end my life before I believe God takes us home.

5. My true strength is sometimes revealed through tears.

Tears are not a sign of weakness. They are a sign of strength. On those downright horrible days, the only thing I want to do is cry. But keeping those tears bottled up only leaves me more depressed and frustrated. Instead I’m brave enough to display my emotions and let those tears fall. It leaves me feeling more cleansed and strengthened.

6. My loved ones can be my motivators.

There might be times I want to give up, but that would cause me to miss out on potential victories and amazing adventures in my life. I try to stay strong not just for myself, but for those I love, and I let that be my motivator.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.