It all began with a headache that lasted two weeks. One doctor’s appointment led to the next and one brain scan lead to another and before I knew it, my doctors and I had been searching for a diagnosis for nearly nine months. During those months of uncertainty, I began losing myself. Over the span of a few short months, my ability to complete basic household chores, swallow, and even walk on my own declined dramatically. My introduction into the life of chronic illness taught me so many things, I’m still learning every day and still adjusting to a different lifestyle at times.
When I got sick I began to withdraw from social activities and found I was more comfortable in settings I could control. Like so many others living with a chronic illness, the hopes and dreams I once had for my life began to be replaced with a longing to just be “normal.”
In 2014, I had two brain surgeries to slow the progression of my disorder, Chiari Malformation. We went through six neurosurgeons to find a doctor who would operate in the first place for a surgery that only helped to slow the progression of a disorder I would be stuck with for the rest of my life.
It gets old.
I wish I didn’t constantly feel so bad – it’s tiring to be so sick. I remember a time before when I felt “normal” and long for those days. If my never-ending symptoms get old to me, I can only imagine what my friends and family think of when we talk about anything related to this awful shape I find myself in. Not only do my symptoms make me physically tired, I’m tired of being tired and my energy levels aren’t the same as they used to be. I’m not a lazy person, but self-preservation is most important when I have my bad days. I’ve learned to prioritize my time and to do the things that I truly enjoy when I’m able to cut down on both the mental and physical stress that comes along with living with a chronic condition.
I’ve become a good liar.
I’ve mastered the art of faking it. I quickly learned it is often easier to pretend I’m okay in an effort to avoid conflicts with family or friends, and to avoid unsolicited medical advice. Over the years, my pain hasn’t gotten any easier or better, but I have learned how to cover it up pretty well. It’s not that I feel like people don’t care or that they aren’t concerned, but I find myself hiding my pain to avoid pity. I almost always say I’m fine when asked. It has taken a long time but I have learned that chronic conditions and chronic pain are difficult to manage. There are good days and bad days, all with varying degrees of symptoms. What I tell a friend one day may not ring true the next, often leaving those who care about me confused.
Dealing with chronic pain can be embarrassing.
I’m relatively young. I was diagnosed at 25 years old and can barely do anything for myself. I find myself in therapy appointments with folks much older than me, who just can’t understand why a “youngster” is already having such physical trouble. There are days (many days) when I can’t walk through a store alone, yet I haven’t been able to bring myself to use a cane. I’ve learned hard truths in this journey. People are quick to judge and medical professionals often have a difficult time treating an “invisible” disorder.
I miss my old self.
I realize how much I have changed. After two brain surgeries and nearly three years of dealing with daily health issues, I find myself grumpy, unhappy, tired and complaining more than ever before. I miss my old life, a life less full of worry and constant stress about how fragile my 28-year-old body has become.
Two years into this journey of mine, I’ve grown to wish that more people understood what chronically ill people go through. People dealing with long-term health issues often wish they were better understood by others, no two illnesses are alike, and symptoms vary even from one case to another. I will always have good and bad days but have chosen to make the most of this life despite my body’s best efforts!