When You Have a Chronic Illness Like Lupus, You Worry About Worry

When You Have a Chronic Illness Like Lupus, You Worry About Worry
worry and lupus

Girl_Who_Cried_Wolf

I’ve always been an over-thinker. There’s rarely a time when there isn’t something racing through my head. But it used to be different, a lot more carefree and a little less serious than it is in my present. Now I don’t just over-think, I over-worry – and it’s never-ending and constant.

I worry about anything and everything now that I have lupus.

I worry about how I managed to end up with this chronic illness that I get to call mine. I worry how it’s going to affect my future and how it’s constantly working to hurt me anyway it can.

In my head, I think about the years ahead and plead with a higher power that I’ll always be strong enough to be who I know myself to be. Right now I’m committed to my fighting spirit, to keeping who I am and what lupus is as separate as I can, but I’m scared that as time goes on that won’t always be possible.

I worry that, like the metaphorical grain of sand in a pearl oyster, lupus will continue to work at me over time, irritating me internally until it finally gets what it wants from me.

I worry about all the medication I take — how it is affecting me right now and what the consequences of all these prescription drugs might be in the long run.

I worry about Mycophenolate and how the high doses I take every single damn day, knowing very little about it other than if I don’t take it I’m knowingly giving lupus a leg up. I worry about how it’s noticeably changed patterns and cycles within my body and what this might mean for my future self.

Worry, worry, worry

I worry about the steroids I’ve been on for nearly six months, how they’ve altered parts of my body and if these changes are only temporary, or something I’ll live with forever.

Every day I look at myself in the mirror and see two sides of myself. Small parts of my own body and face that I know are truly mine, and the parts that have fallen victim to the combination of Prednisolone and Mycophenolate.

I worry about my self-esteem and self-image.

I can see the weight I’ve gained thanks to the steroids and anti-rejection medication, and it’s giving my resilience a workout. Too often I have to remind myself that my self-image is sometimes distorted and the way I look is perfectly healthy.

I worry about the fact that my autoimmune disease makes me more susceptible to bouts of both depression and anxiety, and I worry how this part of my life right now is the worst time for my mental health to be negatively influenced.

I worry about my photosensitive skin, and how doing the things I love and spending so much time outside might work against me. But on the flip side, I worry if I give in by staying in, I’m letting it rule my life.

Most of all, I worry that even though I’ve taken a stand against lupus in the external world to keep myself independent and free of it wherever possible, right now worry has taken up residence in my mind. And I can’t see myself shaking it anytime in the near future.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

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Kristiana “Kristi” Page is a surfer, barista and university student studying an Arts/Science Degree in Philosophy/Mathematical Modelling. Living on the picturesque Bellarine Peninsula on the South-East coast of Australia, she’s deeply passionate about salt water in all forms, amazing coffee – even though she’s not allowed to drink it – and above all else traveling the world: one country at a time! Diagnosed with Stage IV: Lupus Nephritis at 20, she’s determined to not be defined by her auto-immune condition. Using writing as a medium for self-expression she hopes to share her life and journey to both raise awareness and support others in similar situations! A big believer in the concept of dialectics, she loves to share her usually unorthodox – and sometimes controversial – views with the world; and in turn have others share theirs with her. Quirky by choice, inquisitive by nature and above all else: smiling, always!

3 comments

    • Kristiana Page says:

      Everytime I write something, I’m constantly reminded just how many people are going through the exact same thing as me and how many I have to lean on for support.
      I’m sorry to make you tear up but please always, always remember that you are never in this alone! X

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