You Don’t See the Worst Days of My Illness Because I Hide Them From You
When you see me out and about, and you ask how I’m doing, I will likely say “fine,” make small talk and we will go our separate ways. However, my brain was screaming in pain as my eyes felt like they were on fire. But you missed that, because I didn’t want you so see my pain. I didn’t want to talk about how much I was suffering so the automatic response will always be the same, “I’m fine.”
When you see me at a restaurant with my family, laughing, talking, appearing to not have a care in the world, I’m uneasy, anxious, looking at my watch to see how soon before we can leave because I’m in too much pain to sit much longer. But I don’t show that by my outside appearance or actions. I want to feel as much joy and happiness as it appears I am feeling.
When you see me at my kids school activities you see me smiling, cheering and enjoying my kids triumphs, you see me engaged in the songs the choir is singing, maybe even tapping my foot along with the beat of the song. But you won’t see the tears I’m holding back, the focus that isn’t completely there, or the stabling pains that make me want to jump out of my seat.
The focus will be on my kids, always. But you also won’t see the guilt I feel for not being 100% there. When you see me at the movies, I’m enthralled or laughing with my kids or crying at the cheesy story line I got sucked into. I’m eating popcorn because you can’t go to a movie without having some. I look relaxed and at ease. But what you don’t see is the stress and anxiety I endured before even going to the movie, talking myself into getting out of the house.
Going on a date with my spouse, of spending a fun afternoon with my kids was my plan but I really didn’t want to go. The internal struggle of whether to go or not left me sad and angry. I didn’t want to get out of bed that day. But I didn’t want to once again let them down by saying I didn’t want to go. So I got out of bed and forced myself to go.
When you see me at the store, I’m moving along as fast as my body will allow. I’m trying to get this “job” done as soon as I can so I can leave. Getting groceries has sapped every last ounce of energy I had left. I want to get out and go home. But you don’t see burden I suffer doing this or how it feels to be shopping and hauling groceries when I want nothing more that to be in bed, curled up in a ball trying to rest because carrying that bag of groceries made me feel like my arms were going to fall off. When you see me and our paths haven’t crossed in awhile, you ask how my job is going.
I so badly want to tell you it’s going well. But instead, I suck up every ounce of courage I have and tell you I am no longer able to work. I see the wheels in your head running full speed. And I feel anxious because I don’t want to have to tell you how much I suffer, meanwhile feeling like you just don’t get it. But you don’t see how my heart aches and longs for the career I had to give up because my body gave up on me. When you see me out and about, what you don’t know is that the only reason I’m out is that it is necessary for me to be doing whatever it is you see me doing. Or I might be having a “tolerable” day.
A day that maybe I am able to somewhat enjoy myself. You won’t see how bad I’m hurting, how awful I feel, the pain I’m experiencing with every fiber of my being, the guilt I live with for what my body will no longer allow me to do. If you don’t know me or my struggles the way my family and friends know about them, you won’t see the days I am unable to get out of bed, or get off the couch because moving or participating in life is not gonna happen that day.
You won’t see me mentally break down because I am so tired, so tired of pain, so tired of fatigue, so tired of being sick and tired. I only allow that vulnerability to show when I’m alone, or with my spouse. He knows that sometimes I just need to fall apart. I try to hide those moments from my kids as well, I don’t want them to see me as something less that a strong person. I’m not going to show how my illness affects me because I don’t want the attention, negative or otherwise. I don’t want people to look at me and see chronic illness/fibromyalgia.
I want people to see who I was before this happened. I don’t want people to see me struggle and I just don’t want to talk about it. I don’t want you to judge the existence of my illness because you saw me enjoying myself on a day that I could handle my condition. I will hide my pain and suffering because that is not who I truly am. It does not define me, it may take over more times than not, but it will not be who I am.
You are Not Alone. Join the Support group Having a chronic illness is one of the most frustrating things in the world! Especially in a skeptical world that has yet to truly recognize this condition as a reality for thousands of sufferers and most especially because, I “don’t look sick.”
Other than family, or close friends, not many others know I suffer from an impossible, painful illness that has stripped me of the ability to feel human. I don’t want others to see my pain or suffering because many just don’t understand. Chronic Illness has robbed me of my spirit, my character, my zest for life. It’s left me longing for the person I was before it took over my life.
“When you see me, I don’t want you to see my pain; I want you to see my strength and willingness to fight “