Running on Empty

I think it is time to focus and acknowledge that I, like other chronically ill people and people with sickle cell, struggle with this sense of normalcy. Since attending primary school, I can remember instances where I noticed that my recess looked different from the other children, and I never really understood it.

They were out and about, clambering over monkey bars, playing netball and cricket. I was content on the swing sets or listening to teachers’ conversations in the safe fortress of their teacher’s lounge, where I was invited. It was not that I did not want to play or engage; I just realised I could not keep up. I couldn’t clamber on the monkey bars without getting winded. I could not jump high enough to toss the ball into the net without sending a shock wave of pain up and down my lower back when I landed.

The teenage years

I marked this phase off as being a teacher’s pet, but the large gap between myself and my peers became even more transparent during high school. My friends would enjoy the long walk before getting a taxi or bus to take us into town; many students did this. It was the time to catch up after school and tumultuous classes, and I was excited for this bonding time. Yet, I quickly noticed that I could not walk as far or for as long before I grew tired and needed to take a break or grab a drink of water. Being an internal thinker, I tend to fight my struggles with myself and bottle it all up.

I was even more embarrassed than the regular bouts of discomfiture expected from my teenage years. I hated feeling different because of my late blooming caused by sickle cell diagnosis and hated being different because of my struggling organs. I hated being different. It took me time to realise that my friends did not mind having a seat during the walk or buying water before our walk, and that eased my anxiety a bit.

Adulthood

In present days, however, trying to transition into adulthood, I find myself haunted by the same bitter taste of embarrassment I had in high school regarding my limits. It is easy to admit to myself that there are limits to what my body and mind can do. But it is harder to speak it out loud with the eyes of others on me.

I remember once, during my attempts to find friends, I had matched with this woman who had ADHD, and I felt like I was struggling to keep up with not only her quickly-paced thoughts but her long strides as we ‘strolled’ through the city. Adding to the fact that I am a socially awkward woman suffering from social anxiety and struggling to make friends, I tend to push myself and my comfort to the back burner to make others feel comfortable.

Sickle cell the invisible illness

I mean, it is an easy task to accomplish when I have an invisible illness. I have no wheelchair no walker, and I do not yet need to walk with oxygen. To the world glancing at me, I am a normally functioning adult, and I do not try to erase that assumption of me.

This past week, I did it again. For the sake of feeling or appearing normal, I ignored my limits and pushed my needs on the back burner. My husband’s family were visiting from out of town this past week. I was already going through the last days of my recovery from a flare-up, and immediately, I had to dawn the familiar mask of ‘everything is okay’, paint on a smile and get to hosting.

My husband’s family are aware that I have Sickle Cell Anemia, and I believe wholeheartedly that if I let my needs known, they would try to accommodate me. But I never did. Myself always came last when it came to the comfort of others. I had let my body shiver, my lips curled up in a fake smile as I repeated the ‘I’m fine’ answer to their routine checkups on me.

I forced myself to get dressed and try to chime into conversations when my mind was a mile away, and my body was riddled with pain. I pushed myself to keep up on hikes, knowing I needed to take it easy. I threw myself into the booths at scheduled dinners, knowing that when I went home, I would suffer because I wanted them to enjoy their vacation.
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Need to focus on me

I figured it was much easier to disappoint myself, and I would forgive myself repeatedly. But for the sake of normalcy, at what point will I seek my forgiveness and be unable to give it to myself because I have neglected myself? Why must my desire for normalcy lead me to my own discomfort?

Hopefully, I can figure it out. Hopefully, I can find my voice and make my needs known. Hopefully, I may seek comfort for myself as much as I seek the comfort of others. I have limits, and that is okay; that is my normal. No more should I feel the need to run on empty just to fill others up.

Chronic illness, chronic pain and Sickle Cell Anemia are the norm for many.

Until next time, Stay hydrated and take your meds.