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Aug11
2014

A Polite Way of Saying “Incurable”

By Clementine von Radics

When I was 21 years old, my writing career took off. I quit my day job, published my first book, and immediately started working on my second. I felt like I was on top of the world or at least on my way to it. I was living out my dream.

A few months later, when I started getting fevers constantly, I brushed them off. I thought it was mono or some weird infection. I got a prescription for antibiotics and went back to my busy life. When I was too tired to get out of bed, I called it laziness. I said I was staying up too late and needed to take better care of myself. When my hands became painful and contorted and my legs were too sore and stiff to walk, I finally acknowledged something was wrong. In the end, it took me a year to book an appointment with a doctor. That doctor referred me to another doctor, who then referred me to another, who then referred me to another. After months of tests, I got my diagnosis: Rheumatoid Arthritis, a chronic illness.

The thing about the word chronic: It’s just a polite way of saying incurable.

In that one year, I went from a healthy, active person to having constant fatigue and walking with a cane. I take a handful of pills every morning. The pills make my hair fall out, make my stomach swell, and make my hormones fistfight inside me. It is no longer easy to live in my body.

When I first got sick, I felt powerless in a way I had never known. Most days I was too exhausted or sick to complete basic tasks, no matter how hard I tried. I was scared and angry and didn’t know who or what to be angry with; I didn’t understand how you could fight so hard and still not win. But I didn’t know what to do, except fight.

I have always been tough. I have a will like steel. I am the nail and the hammer that hits it. I am the wolf. The lion. The last one standing. I do not cry in public, complain when I am hurt, or give up. I push harder. I am a fighter.

But sickness? Sickness comes for you no matter how tough you are. I can try to ignore it, to push it away, but the truth is still there, hard and edgeless: I have lost something that cannot be recovered. There is something stubborn and unwelcome in my body, and it is stronger than my will.

My illness is not a death sentence, at least not an immediate one. If all goes well, I have a lot more years ahead. The struggle now is to accept the dichotomy: to be sick and still be whole. To be sick and still be tough. To be sick, and maybe even to be tougher than I was before.

Now I live side-by-side with the thing that hurts me. It is there when I laugh and kiss my boyfriend and write poetry. It is there when I take my pills, when my hair comes out in clumps, and when I can’t sleep from the pain. My sickness is there when I look in the mirror. It is not all that I am, but it is an inexorable part of me. I am finally beginning to accept that. Which is to say, I am learning to accept the world in all of its contradictions and live as best I can within them.

I will adjust to my new normal. Who knows, someday there may be a cure, and I will get better and everything will be like it was. Maybe, but I can’t wait for that. I have to live in this body. This one I have now, today. This body, with all its flaws and strengths and complications, is all I have. Coming around to this way of thinking is slow going. It’s emotional and exhausting and some days it feels closer than others. It’s not easy, but true healing never is.

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Comments (14)

  1. Fred Hundt

    I share the diagnosis of rheumatoid arthritis with you. I have to remind myself that the pain I feel is a reminder that I’m alive…that when it hurts to walk it means I’m able to walk and that there is still much I can do with this chronic companion. Thanks for a wonderful post on a difficult topic.

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  2. Maryann

    This is so spot on. Thanks for writing. It’s especially hard to live with this disease when no one understands it. The fatigue is the worst part. I’d take twice the pain if I could just have a normal person’s energy every day. I was 35 when I was diagnosed. It’s so frustrating that because we look “fine,” there is little tolerance from others – like they think we’re faking or something. It is not a socially sympathetic disease. Best of luck to you.

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  3. Melissa

    I have RA as well. It is hard sometimes – really hard. You’ve described it so well. Thank you for writing this.

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  4. Holly Broyles-wharff

    I have rheumatoid arthritis and Bi-polar. Thank you for writing this.

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  5. Leigh Joiner

    Thank you for your truth and your willingness to share it so candidly. I, too, live with autoimmune arthritis (Sjogrens, along with fibromyalgia) and it has turned my life upside down, yet given me insight that I could never achieve if I was not “sick.” This illness can rob you of many things, such as a job, friendships, a home, and some relationships but for some of us, including you, we realize we’ve been given a gift. We’ve stared at our own mortality and we are brave enough to look past it and find what passions bring us happiness and how we can share those passions and happiness with others. Continue to stay courageous, friend in the fight 🙂

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  6. Lisa Travers

    I received a fm diagnosis about a year and a half ago after having to have my thyroid removed. Since then, I’ve had to forfeit my counseling career, sell my house, move to a studio, I’ve been rejected for benefits twice by SS and once by my retirement system. I share your sx with the exception of my hair falling out. My son’s college future is imperiled and my rent is late. To say the very very least this has completely redefined my life and made me, out of desperation, re-evaluate what my life is for. But I agree and I understand. It has also reignited a need to do art. It’s made me look at what made me go into counseling at all. I’m releasing outcomes. What else can you do when you know you’ve taken care of all contingencies, and nothing’s left.

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  7. Lisa

    I feel your pain, your rage, your acceptance, your strength. We are living on, in spite of the hurts. Fight on! Sending love.

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  8. Rachel rayjax7@gmail.com

    I was diagnosed with RA as a toddler. I am now nearly 27. Three years ago, I was also diagnosed with Lupus.

    The pain is real and one of my biggest hang-ups is living with the reality that what makes up my body is incurable; however, even still… I have a choice how I move forward day to day. You are learning this. And you are learning to live with grace and self-compassion in a way that may have never crossed your mind.

    Hang in there. There is purpose in even this pain

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  9. Michelle Welsh

    I lost my sister to this disease. She was 32 years old when she passed. She spent the last 11 years of her sweet, loving life totally immobile, unable to even eat or brush her teeth on her own. In the end, she ended up having 3 strokes in 24 hours and died. My only consolation is that she is no longer in pain, is no longer covered in arthritic deposits(inside n out), can jump up n down, dance, run or what ever she wants. I am sorry you have to go thru it too, but love your attitude! Thank you so much for sharing ~~~
    Michelle Welsh

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  10. "Arthritis Ashley"

    Great post. I, too, am a writer. I have had rheumatoid arthritis since age 10. I’m now 30 years old and also have lupus, sjogrens, and celiac. Some days are a challenge, but as you said, it’s all about adjusting to the “new normal.” Please feel free to check out my blog with the Mid Atlantic Region of the Arthritis Foundation sometime. My name is Ashley Boynes-Shuck and I go by Arthritis Ashley online. Feel free to contact me any time if you want to talk or commiserate. Good luck and good health to you! 🙂 – A

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  11. Anonymous

    Thank you for your post. Through my struggles with PTSD I have had a hard time finding peace within my own dichotomy.

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  12. Stacy

    This piece is a beautiful communication to others who have a difficult time understanding what it means to live a chronically ill life. It has been almost 8 years that I have battled my own body . Your words say what i have felt. Thank you, they are not only a beautiful expression but an exquisite display of strength.

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  13. Ginny

    I too have been dealing with very severe health issues that have led to 3 major, invasive surgeries in less than 2 years. I’m now facing a 4th. I have 2 boys that need me. I’m the main income provider in out household.

    I’ve tried to realize that my body isn’t the enemy. I must mentally support my body and cherish how hard it’s working for me,

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  14. Vickie

    Dear Clementine, I just found a note scratched on a piece of paper with your name and poem on it that I wrote over a year ago. I was searching for answers for our daughter who just turned 18. Once a vibrant healthy young lady, almost overnight she was struggling with “mono”, arthritis and a number of other “symptoms”. Long story short…after many months and many different doctor opinions later we had her tested for Lymes Disease. If you are not familiar with the disease, please research it and have yourself tested. (You need to have a test done through a Lyme Literate Doctor as the “government test” is not always accurate.) It has been a long year, but we are finally seeing much improvement. Many “chronic illnesses” are the result of Lymes Disease as it is known as the Great Imitator. If you have any questions please feel free to email me as Lymes Disease is not taken seriously. It can become a very chronic and debilitating disease that often goes misdiagnosed. This disease is not only spread from deer ticks, but also from horse flies, mosquitos, and spiders, and not everyone will notice a bulls eye rash. Studies also show that mothers can pass it onto their unborn child as well as sexual partners can transmit it to each other. I hope things are going better for you, God bless 🙂

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