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My Daily Battle With Mixed Connective Tissue Disease

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It’s 11:00 a.m. As I groggily open my eyes, I’m struck by the oppressive sensation of heaviness coursing through my body. My stomach drops, and I internally curse. I’m having a flare. I haven’t even attempted to get out of bed, and I can already tell it’s going to be a rough day. It’s as if someone replaced all my blood with lead and my bones with brick, causing every minuscule movement to require herculean effort. Slowly I roll over to my side, and the simple exertion leaves me reeling with nausea and aching from head to toe. My only option is to curl up into a ball and wait until my body calms down enough for me to move.

On flare days, my fatigue can be so overpowering that I am unable to leave bed for more than 30 minutes at a time. Simply propping my head up with a pillow is too much, and I’m forced to lie flat with nothing to distract me from my broken body but loneliness and frustration.

Sometimes the heaviness lets up, and the pain decides to attack. Typing on my laptop feels like someone is savagely stabbing each finger joint. Every step feels as though I’m sprinting on two severely injured knees, and walking across my college campus causes such intense pain that my eyes involuntarily water. As if that weren’t enough, my entire body aches relentlessly like I have a perpetual flu. The agony is so intense that I sometimes step outside in the Minnesota winter without a coat because the stinging cold provides a momentary distraction from the war zone beneath my skin.

To top it off, any number of other symptoms may capriciously appear. My nemesis is brain fog, an evil which derails my life at the drop of a hat. On brain fog days, my mind simply stops working; I can’t concentrate long enough to follow a conversation, let alone attempt to do schoolwork. I walk into the shower with my clothes on. I forget previous conversations. I repeatedly lose my phone. I feel lost and confused and helpless, and there’s absolutely nothing I can do about it.

Some days my vision is blurry. On others, I’m the epitome of clumsiness, constantly tripping and dropping things and crashing into people. My ears ring. My hands swell so much I can’t straighten my fingers. I have terrifying tingling in my arms, legs and face. I may have trouble breathing or even swallowing.

And the worst part is, I never know what to expect when I wake up each morning; I could have any combination of debilitating symptoms or I could have none at all. Planning is impossible. I am forced to live life one day at a time, never knowing how different my world may be in 24 hours. I could be in the hospital, I could go into full remission or I could experience anything in between.

Although my life has been turned upside down, I’m outwardly indistinguishable from my former healthy, happy-go-lucky self. My illness is imperceptible, so I often feel like a double agent, wearing a facade of health while secretly struggling to survive the day. I smile to mask the pain. I laugh to disguise the fear. Few realize how much I stifle, suppress and pretend just to maintain an appearance of normalcy.

I am an actress, a charlatan. While I desperately cling to any semblance of my former well-being, I feel my illness pushing to encompass my identity, to envelop my entire universe and rob me of myself. Some days, I’m convinced it could win. Disease is all I can think about, and I watch my pre-illness persona retreating farther within the depths of my being. I am slipping away, and I begin to forget who I was before all the pills and appointments and blood tests.

While I may not look sick, my “invisible illness” has seeped into every aspect of my existence. Each day is a strenuous physical and emotional battle between myself and my body. Sometimes it feels impossible to overcome. I want a vacation from my life and would give anything to revisit my pre-illness world. But I know I must keep pushing and fighting – I have no choice.

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Thinkstock photo via Vladimir Arndt.

Originally published: May 5, 2017
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