The Hard Thoughts About My Illness Hidden Behind 'I'm Fine'
I have always been an avid reader, but my purpose for reading has changed with being ill. I use books to escape the daily struggle of chronic illness. Recently I was reading a book called “The Book of Speculation” by Erika Swyler. It has nothing to do with chronic illness, but in one of the first chapters there is a line of text that says, “Hard thoughts are held in small words.” I was deeply affected by those words.
Hard thoughts are held in small words. A simple sentence of powerful words for someone with a chronic illness. We all know the two small words that hold the hard, painful and terrible thoughts. I’m fine.
I say these two words a lot. I have been sick for over five years with fibromyalgia and myalgic encephalomyelitis (ME). Every year I say these small words more and more. I don’t even realize I am saying them sometimes. A friend called me out on it recently. “Don’t say you are fine when you are not,” she said.
Those two small words are ingrained in many of those with chronic illness. There are quotes and sayings about “I’m fine” all over chronic illness support groups and on Pinterest. When I scroll through my chronic illness board there is pin after pin that talks about “I’m fine” with a picture or words behind it saying the opposite.
I think there is a moment that comes in every chronic illness journey when you realize it is easier to stop saying the hard thoughts – I am sick, I am in pain, I can’t handle it anymore, I am broken, I am scared — and just start saying “I’m fine.” I remember my moment: when I saw the look on someone’s face as I again said “I am sick.” The look was a mixture of pity and unease. I remember forcing a smile and saying, “But don’t worry, I will be fine.” But that is the problem. There is a reason it is called a chronic illness — I will never really be fine.
When I am exhausted or in a lot of pain I find it is easier to say “I’m fine.” It is a daily battle when you struggle with chronic illness. It takes energy to talk about how I am doing so I usually don’t say anything even if the person I am talking with is receptive to hearing about it.
Hard thoughts are held in small words. Now I can’t say “I’m fine” without thinking about these words. To those that I have recently said “I’m fine” to — who have seen me smiling, laughing, working a demanding job, taking care of my family, that never guess how sick I am – here are some of the hard thoughts behind those small words.
Not being able to stop from crying when my child wants to sit on my lap because the pain is unbearable.
Losing control of my bowels for the third time in a few weeks.
Carrying a few boxes up the stairs and having to lay down because I feel like I have been hit by a truck.
Walking through the grocery store and having to steady myself and take deep breaths because the nausea is so bad.
Wanting to take a long hot shower but not being able to because the water hurts my skin and feels like rock pellets pummeling my body.
Waking up feeling like I have gone on a 24-hour bender even though I went to bed early and didn’t have anything to drink.
Standing in my closet giving myself a pep talk because I have to take the kids to school and have a full day of meetings at work but I feel so sick all I want to do is go back to bed.
Sitting in a meeting at work and starting to panic because the right side of face has gone numb and the rest of my body feels like it is burning from the inside out.
Lying in bed at night tossing and turning because it feels like my body is being stabbed by tiny knives over and over again.
Resigning myself to the fact I am going to have to take the pain medication even though I was hoping I would make it past 2 p.m.
Staring in the bathroom mirror at the haggard lady who is looking back at me and wondering how at 38 years old I could feel like I’m 90.
Begging my body to please give me a break because I have too much to do and I am so tired of feeling like I have been dragged through gravel and repeating please, please, please stop me from throwing up because I don’t have time for it.
Silently crying in my car before picking up my kids from school because I feel so exhausted that I can’t breath and I can’t imagine taking another step.
Lying on the floor beside my bed and wondering how I have survived over five years of feeling like I have the stomach flu, food poisoning and a hangover almost every day and how the hell am I going to keep going like this every day.
I struggled to find the best way to end this story. Do I write about these horrible moments and just stop, leaving the struggle and the pain hanging in the air? Initially yes, that was what I wanted to do. I get tired of always looking for the silver lining. I get tired of wrapping up the struggle with “I will be fine.”
But at the end of the day that is not who I am. Even when I don’t want to look for the silver lining I still find it, kicking and screaming but I find it nonetheless.
So here is the silver lining I have found in the hard thoughts that are held in small words. Have at least one person that you can tell every ugly, terrible, sad, hard moment.
I have two. They are my listeners when I say “I just need to tell someone.” The things they hear from me and the raw and emotional moments that they witness often make me wonder why they are still my people. But they are always there the next time and the next time after that. They love me, support me and remind me of the person I am outside of chronic illness. Once the hard thoughts are out of my mouth I find it easier to face the “I’m fine” moments. Knowing my two people are behind me helps me face each day.
Find your person and then be that person for someone else. Being there for someone else helped me find some purpose in my struggles but more than that I found a kindred spirit in this chronic illness struggle. It feels good to be able to help someone and not always be the one who needs help.
Hard thoughts are held in small words. And indeed they are. But good thoughts are also held in small words. I care about you. I am here for you. I will listen to you. I support you. I love you.
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