The Moment I Realized My Illness Had Fundamentally Changed My Life


I will never forget the day, the hour, the moment, when I clearly saw my chronic illness had fundamentally changed my life.

It wasn’t the year I spent the whole summer sick, going for numerous medical tests only to finally hear my doctor say, “I don’t know what is wrong with you,” as she stared at me with blank eyes. Her staring eyes somehow felt as if they were accusing me of choosing to have this illness just to frustrate her.

It wasn’t the three days when I had such a horrific pain flare that two heating pads and blankets couldn’t warm me up. Teeth chattering with cold, I would drag myself to the wonderfully hot shower only to have my hyper sensitive skin feel like it was being pelted by bullets of water drops. I dreaded getting out of the shower because as soon as I dried off, the wracking chills would return. I would pile on the blankets and heating pads trying to get warm until the bone deep cold again forced me back into the painful water.

It wasn’t the evening I sat with old friends at a nice restaurant chanting to myself, over and over and over again, “You can do this. Just hold on. Take a deep breath, smile. Don’t ruin everyone’s night because you have to go home and scream with pain into the pillow.” I sat gritting my teeth, praying the minutes would speed by until I could finally say goodnight to the friends I had been so excited to see earlier that evening.

It wasn’t the morning when my husband rushed home from church to hold me as I screamed into the pillow because the pain was so great it burst out of me in choking sobs. It wasn’t even when I was in too much pain to take care of my beloved granddaughter.

It was the day my friends left me behind.

We were getting together for the first time since two of my friends had moved away. I hadn’t seen them, or the rest of our group of friends, in over a year and I was excited to be with them again. Although I could feel my pain rising before we met up that evening, I prayed I would still be able to enjoy our time together.

Sitting together on an outside deck we were talking and admiring the beautiful lake view when something caught our attention on the lawn below. Jumping up, my friends decided to investigate and moved swiftly down the long steep steps to the lawn. I stayed on the deck above, envying their ability to move around with ease, knowing I was in too much pain to walk down the steps. If somehow I did make it down, the awful fatigue I was feeling would never allow me to climb back up those steps.

As I watched them, a sense of loss filled me as I realized how different my life had become and how much my chronic pain had changed me. I’d always been the one to plan the parties, organize the nights out, host the dinners and support my friends through life’s joys and sorrows. But now, it felt like they were moving on without me.

Mentally chastising myself for “overreacting,” I went back inside to lay down on the couch hoping the rest would alleviate the pain.

When they came back into the house, they began discussing dinner plans and which restaurant we should go to. Finally, they looked to me, expecting the person I “used to be” to reappear, laughingly organize the driving arrangements and make the restaurant reservations.

Instead, I said I couldn’t join them at the restaurant because I was hurting too much and needed to lay down. I saw the confusion on their faces and their inability to comprehend the pain I was in.

We all gathered our things and walked towards our cars. I achingly and slowly slid behind the driver’s wheel of my car as they got in an SUV together and drove off to the restaurant. I was stunned that no one had even considered ordering in so that I could participate.

They left me behind and I was suddenly overwhelmed by the blinding understanding that my chronic illness had fundamentally changed my life.

I still see them occasionally, I still love them, but I know they don’t understand my new life. Even though I have explained the never-ending pain and fatigue to them several times there seems to be a wide chasm between us that my word can never bridge. So, I have decided to treasure the past we had together and accept the more distant relationship we now experience.

Although that moment in time is burned into my memory, I won’t accept a life lived in defeat. I am learning to move to the different rhythm of life that chronic illness is teaching me. I can’t say I like the new rhythm, in fact, there are days I don’t understand the beat of the new music in my life at all. I wrestle to clear my thoughts of disappointment, anger and self-pity.

But, I’ve also learned I don’t have to fight my sorrow and grief. Instead, I choose to allow the pain into my soul and then choose to let it flow out of me. My choice to fully feel and accept the pain gives me the freedom to let it go and learn new ways to experience the happiness still available in this fundamentally new life of mine.

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