I’m Too Tired to Share My Reality

I’m Too Tired to Share My Reality
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I wish there were a way to take screenshots of the significant moments of my journey with lupus. I wish there were a way to collate those moments, and the feelings that came with them, and turn them into a USB download. I wish that when I started to explain what it is like to live with lupus, I could plug that movie into people’s brains and click play instead.

Because one of the hardest parts about being a 24-year-old lupus warrior is that almost no one understands me. And that hurts.

The pain does not stem from lupus alone. It’s from the isolation that comes with being unique in a way no one wants. It’s from having to constantly edit my experience to make it palatable and somewhat relatable for other people.

The truth is that it’s not easy for other people to hear about much of my reality. No one wants to hear that someone else is suffering, or that I have been struggling with my health since the start of my 20s. But that is my reality. If it pains you to hear about it, I dare you to imagine walking in my shoes.

There is no way to explain to someone who is healthy what it is like to live this experience. It is not enough to be a sympathetic outsider, although I appreciate the gesture. And until you have worn my shoes or seen life through my eyes, you can’t be more than sympathetic.

Only when we have done a “Freaky Friday” body swap will you understand that “I’m tired” is overwhelmingly understating my truth. When I say it, I don’t mean that I’m tired. What I mean is that I’m exhausted from being exhausted, and my body doesn’t remember what it feels like to know rest. My scale of “tired” has been broken for some time now. These days, the spectrum starts at tired and heads toward crippling exhaustion.

But I don’t give the long-winded version. I just tell you, “I’m tired.” It’s easier than trying to explain what most people can’t fathom. And the explanation itself is exhausting, and often, I don’t have the energy to spare.

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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.

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!
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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!

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4 comments

  1. CARIDAD says:

    I do understand you, everything you said is exactly how I feel, I can’t imagine being that young and living with this disease, just starting to live and unable to enjoy the things a young person does. I have been a bit bitter these days, you see my husband and I planned to travel once we retired, we travel a little bit but in the end I just can’t handle it making it even hard to travel to see our grand babies, it makes me angry and sad, my husband understands pretty well and now even more since he also has being diagnosed with an autoimmune disease destroying his muscle, I could say I have two true friends from school many moons ago, that when they ask “how are you” I don’t feel obligated to say “I’m fine” the rest don’t even call anymore, some days I wake up and cry and cry. but when I read that young person like are as limited as I’m this, breaks my heart. please take care you still may catch a new treatment I know for me it will be to late

  2. JoEllen Knie says:

    Beautifully written and oh so true.
    I’ve stopped even saying that I’m tired. I’ve learned after 25+ years of living with Lupus that no one cares or understands.
    Sad.

  3. Laura says:

    I understand too. I enjoy your articles, I think I could have written them, which gives me comfort. The ‘tired’ comment is just so spot on. Although my meds have me feeling so much better than I have in years, I just don’t think anything can help the fatigue… if there is I’d try it!

  4. Rich says:

    Although I’m not afflicted with Lupus alone but, instead, Mixed Connective Tissue Disorder (MCTD), I feel all that you’ve described. It took many years for doctors to finally LISTEN and figure out what was going on. Nothing about me is usual (I refuse to use the word “normal”): I’m a male caucasian so for the first 5 or 6 years not one medical professional (including my wife at the time) looked in the direction of autoimmune disorders! It was easier for them to tell me that I was getting older (I was 38) and joint pain comes with age. WTF?!?!?! I am now 53, on meds, and feel like a dirt nap would be a better choice for me.

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