Healthy Living

My Illness Is NOT My Life's Story

When I was diagnosed with a rare, chronic condition at the age of 20, I couldn’t have imagined the struggles that came along with it. Nearly four years later, I write on how my illness affects my daily routine... but never my decision to chase after my dreams.

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Just 20 more minutes. You just have to get through 20 more minutes without fainting.

I grab onto the wall and clumsily reach for the bathroom’s door handle to keep myself upright, where I’ve been hiding for the last five minutes trying to regain my composure. My hands are shaking, and my head is spinning faster than a merry-go-round. It’s only the start of the day, but already, I need to lie down. I need to eat something. I need to rest.

I don’t want to be seen as a burden. I want to avoid the discrimination that I’ve so often experienced as a result of my illness. I want to avoid being seen as weak. I know my will is strong, that my determination is unwavering. My body, well… that’s a different story.

“I don't want to be seen as a burden ... I want to avoid being seen as weak.”

Common Variable Immune Deficiency Disorder, otherwise known as CVID. I bet you don’t know what that is, do you? Neither did I. I had no idea, until it came for me.

CVID is a rare disease that affects only 1 in 25,000 people. My immune system fails to produce precious antibodies, most specifically, IgG.

Because my immune system does not produce antibodies, I am very susceptible to illness. A simple cold or flu has the potential to spread throughout my system and kill me if not treated immediately, because my body can’t fight off infection. Because of this, when I get sick I usually am sick much longer than the average person, and it can become an emergency without any warning. It is not unusual for me to be down for a month when a cold or the flu comes to call.

When a person’s immune system does not work, each part of the body is affected. Besides my susceptibility to illness, I also struggle with extreme fatigue, confusion (otherwise known as brain fog), irritable bowel syndrome, gastrointestinal issues, joint and muscle pain, depression, and other unfortunate side effects of not having a functioning immune system.

“When I get sick I usually am sick much longer than the average person, and it can become an emergency without any warning.”

As a 12-year-old child, before I was diagnosed, I locked myself in the bathroom at the hospital because I was afraid of getting a shot. Now every week I poke myself with needles, poke poke poke, four of them that slide into my stomach and delivers life-saving plasma to my body for two hours. I don’t receive a reprieve; every week, for the rest of my life, this is what I will have to do until researchers find an alternative or a cure.

This medicine isn’t cheap. A year’s worth of treatment costs over $100,000 for me alone. Thankfully, my insurance covers it, but I always worry if there will come a day that it won’t.

I’ve heard that I don’t look sick. I don’t tell my friends and family how much my disease affects me, because I don’t want them to hurt by knowing how much pain I’m in.

CVID is a monster that alters your reality and forces you to wear a mask. It’s laughing through a joke at your favorite restaurant so your best friend doesn’t recognize the nausea, or smiling at your boyfriend past the pain, so he doesn’t see you cry. It’s lying awake each night for hours at a time, because the chronic pain that’s wracking your muscles won’t let you sleep even though you have to work in the morning.

It’s dreaming of carrying a child in your arms, and waking up to the reality that a baby is something you may never have, because the pregnancy is risky and there’s a high chance you could pass the disease onto your offspring.

“But this is chronic illness. You don’t get any second chances. Each day I strive to achieve the in-achievable 'normal.'”

I wouldn’t inflict this disease on my worst enemy, let alone my own son or daughter. The dream that I have kept as a little child in my head, the dream of becoming a mother, locked inside a snowball of tears and delight, is balancing on the edge of a shelf and ready to topple over, smashing into pieces at my feet.

The worst days, the flare-ups, are faced when I have force myself through the agony and say yes to another deadline because I need the money, when I’m so drained I can barely see straight.

But this is chronic illness. You don’t get any second chances. Each day I strive to achieve the in-achievable “normal.” It is a thing that does not exist, but people like to think so, so we all become puppets and pretend that it’s real.

The term invisible illness means it’s truly invisible. Sometimes I feel invisible, too.

Common Variable Immune Deficiency Disorder. When I was diagnosed three years ago, I thought such words meant the end of my life.

But it didn’t end my life. It only made me push myself harder. After I was diagnosed, I took the leap and started my own business. Today, I have published fifteen books under my name, written twenty, and am in the process of publishing other authors. I have traveled all around the United States sharing my work. I fight for freelance and editing contracts daily as my bread and butter. I query and think and never stop writing.

“The term invisible illness means it’s truly invisible. Sometimes I feel invisible, too”

I want to be a writer, a successful writer, and I will become one or die trying. There’s something within me, no matter how bad things get, that stubbornly refuses to give up. I like impossible things. Maybe that’s why God, fate, the universe or whatever you want to call it bestowed this disease upon me. To prove to other people with my condition that we still have a chance to create an amazing existence.

There have been times when things got dark. Really dark. But I have dragged myself out of the depths of my illness by creating opportunity where there was none. I have beaten back the lion and chased him into his den with nothing more than a shaking fist and a raging roar. I scream at him that I will NOT be driven into a hole by this terrible thing they call CVID!

I refuse to let this disease prevent me from having even a sliver of the life I deserve to have. To all those wonderful experiences, and to all the bad days, I say, let them come.

It’s just the incredible gift that I call my life.

To learn more about CVID, visit the Immune Deficiency Foundation at www.primaryimmune.org. You can contact Megan Linski through her website at www.meganlinski.com, and sign up for her mailing list here.

Suffering The Silence: Portraits Of Chronic Illness