What I Want My Loved Ones to Know Most About My Chronic Illness

To those who see me and think they know me based on my outward appearance, to those who know me yet don’t quite know what to believe about me and to those who love me despite what they can never understand — this is I want to say to you but don’t have the courage to express. These are the words that keep me up every night, knowing they will never be spoken and you will never hear the truth. These are the words that are locked up inside of my heart, guarded by years of hurt and pain.

I was diagnosed with gastroparesis in 2014. One of the most difficult aspects of dealing with this severe, incurable motility disorder isn’t the disorder itself; it’s the judgment that comes along with having an invisible and chronic illness. It steals every ounce of what I once had, yet I still appear healthy. When people see me, they don’t believe I’m sick. I’m not in a wheelchair, hooked to oxygen tanks or equipped with nasal tubes. Therefore, in their eyes, I must be healthy.

But they don’t know a month ago, I was almost placed on a feeding tube. I was too weak, malnourished and dehydrated to feed myself. They don’t know I have six specialists I see on a weekly basis, none of whom have been able to provide even a small amount of relief. They don’t know I feel constant pain every single day; pain that never seems to subside. So to those of you who know me from a distance, don’t judge me by my appearance alone, for there is a greater story underneath the smile, the makeup and the dresses.

What I wish to share with you is simply the truth about my chronic illness. I’m not drug seeker or drug addict. I take whatever I can to allay the constant, agonizing pain I’m in, but I’ll wait until the pain becomes nearly excruciating before utilizing the last resort — pain medication.

I’m not ignoring you. I want nothing more than to spend time with you, yet oftentimes my body simply won’t allow me to function. I’m not being selfish when I tell you I need to take care of my body and my health. I’ve been to birthday parties, weddings, family reunions and other events that were important to you when most would stay home writhing in pain. Yet I took pain pills, put on our smile and was there for you. Please don’t make me feel guilty for taking care of myself because it’s something I do far too infrequently.

I’m not lazy. Please don’t tell me you wish you could stay at home all day on the couch because that’s not what I do. I want nothing more than to have a full-time job, to be needed and to feel important. But my body renders me physically incapable on a near daily basis.

Lastly, I’m not weak. I’m fighting a war against my body. It’s a war most would have surrendered long ago. Yet I keep fighting, enduring unimaginable pain but never quitting.

To those of you who already understand the effects of my illness, I want you to know I appreciate your love, care and attention. When you are constantly sick, those who truly love you try to take on the burden of your pain, even just for a moment. But I want you to know it’s OK if you don’t have all of the answers to my problems. It’s OK if you don’t know how to respond to me or even what to say to me at times. It’s OK if you feel helpless as gastroparesis wages a war on my body you’re unable to prevent or pacify. I don’t need you to have all of the answers. I don’t need you to say all of the right things. I don’t need you to even take away the pain. Simply being with me, believing me and never giving up on me will bring me greater happiness than you’ll ever know.   

Yet what I want my loved ones to know most is that I am still me. I’m still a person behind the disorder — behind the years of pain. Please love me, laugh with me, be with me and treat me like you did before I became sick — like your daughter, your friend, your sister and your wife. Like a person. While my body may change and the disorder may take more of me than I wish, I’m the same person I have always been. Behind the pain, I’m still, and always will be, me. Gastroparesis can take my ability to eat, sleep and work, but it will never take away me.

Follow this journey on Strength in Pain.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] 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.

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