Lupus – 10 Years On

Rachael - The Hibbs Lupus Trust 3

What is lupus?

The answer depends on how much you want to know.

A doctor would describe lupus as “a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs” but a 38-word summary doesn’t do my disease justice. That’s not what lupus is to me.

Lupus is an ever-evolving list of medications and pills. The prick of needles for blood tests and peeing into a tiny plastic container — sadly all-too-familiar routines. It’s sitting in the waiting room of the rheumatology ward surrounded by people, 40 years older, staring at me while wondering why someone so young is in their company. It’s the constant anxiety of when my next flare up will be.

Lupus is learning to accept that I have unresolvable rage. There’s a part of me that probably will be forever furious about having lupus. I’ve long been accepting of the fact that I have it, and yet I can’t help begging the universe to tell me what exactly I did wrong. I can’t help but ask the question, “Why me?”. Lupus is mentally beating myself when I can’t get out of bed, which only makes me more tired. Lupus is having an overwhelming love for a body I also struggle not to hate. It’s remembering that while parts of me are self-destructive, the majority is doing absolutely everything it can to keep me alive. 

Lupus is getting ink put in my skin to remind me of exactly where I came from and where I’m heading. It’s getting up each morning to look at the tattoo on my body knowing it may speak of struggle, but it shouts to perseverance, survival and hope. It’s looking at my butterflies and remembering I have overcome this disease time and time again — today is not the day to back down.

Rachael - The Hibbs Lupus Trust 1

Lupus is the disease that has tried to ruin my life. It’s the reason I get up every day ready to fight. Lupus is simultaneously the worst thing that’s ever happened to me and the reason I live my best life.

Lupus is a battle I won’t ever win, but it’s still worth fighting.’

My first decade with lupus ??? here’s to the next ?? #10years

Thank you Rachael for sharing your story and inspiring others!

If you would like to share your experience of lupus and be featured on the blog we would love to hear from you! Send us a message!

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  1. anna nicolaides on September 27, 2019 at 16:00

    you are a beautiful young woman…and an inspiration to everyone…keep on using your positive emotions to get you through the difficult days..and to help those who cannot cope.

  2. Mrs M on September 27, 2019 at 23:01

    I’m in that same boat… 10 years of living in an unpredictable, alien body asking it all to go away so I can wake up at the age of 25 again enjoy a carefree life… but no.
    We can only make life what we want it to be inspite of the pitfuls. It hit a nerve. But we are alive and that’s what counts regardless of these obstacles. Thanks for sharing, take care x

  3. Lorna Edwards on October 3, 2019 at 20:45

    Having lupus for 13 years, im now 25. The emotion that you go through waiting for you consultant, waiting for blood results and seeing everyone else is much older it brings great anxiety you do ask you self “why me”
    Reading this is everything that lups is but not only to me, too my family too its a hard journey but your so right its worth the fight

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