My Lupus Journey by Courtenay

What is Lupus - The Hibbs Lupus Trust

I was diagnosed with lupus (SLE) in 2012 at the age of 20. After suffering a week’s worth of consistent migraines, I wound up in hospital. Initially I was diagnosed with a blood clot on my brain, but later they realised it was a large amount of inflammation/swelling, but they still weren’t sure of the cause. Many invasive tests later and a 2 week stay in hospital, I was diagnosed with lupus. I was relieved I didn’t have a clot, or tumour, so was quite naive in thinking I could just go home take my medication, and that I would be back at work within the week or so. My diagnosis was fairly ‘smooth’ compared to others, but I wasn’t really prepared for what was to come after…

So what is lupus?

Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Your joints, skin, kidneys, blood cells, brain, heart and lungs can all be affected.

But lupus is so much more than that. Lupus doesn’t just dictate your physical wellbeing, it dictates your way of life. Lupus decides if you have a social life after work or a Saturday night with your friends, or whether you stay at home dosed up in bed with your V shaped pillow (your new best friend).

Lupus decides if those friends stick around after the first few months, or if it’s too much to handle.

Lupus decides if I hoover or make lunch, because I don’t have the energy for both!

Lupus is having to choose your career path around your health.

Lupus is being discriminated against at job interviews.

Lupus is looking so well and healthy, when inside your body is doing everything it can to make you feel awful.

Lupus is knowing that the majority of the time, the pain I am feeling isn’t actually doing any damage to my body but that doesn’t bring me any comfort.

Lupus is also knowing at the flick of a switch, it can attack my organs.

Lupus is knowing it can affect my chances of starting a family.

Lupus is rattling like a pill pot and having infusions every 4 weeks to make me feel ‘ok’.

Lupus is knowing that I am not alone in this fight.

Lupus is knowing that I am fighting a battle that will never end, but I do it because I know there will be better days.

Courtenay 💜

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Stock image used for illustration.

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2 Comments

  1. Dave on August 21, 2020 at 18:59

    Courtenay,
    You are amazing. You have been through so much starting at an age when things should have been different for you.
    You have maturity way above your age and one thing Lupus has given you is the ability to work out who and what is and isn’t important in life.
    This article will help and resonate with others
    Love you
    Dad
    X🐒🦋

  2. Bridget Cromack on August 22, 2020 at 20:12

    I was diagnosed at the age of 31, 33 years ago. I was 29 years old pregnant when I first notice how unwell I felt. After my baby was born I felt unwell my body ached all over. Doctors didn’t know why I felt so unwell. It took 20 months a huge loss of weight and 2month in hospital of invasive tests.
    They told me after I was diagnosed and 19 biopsy later, it would be on list for future first year med students.
    Living with lupus can be difficult. People still forget I have limits to what I can do.
    My consultant at the time said. You have a invisible condition. You may be fatigued but people assume your well.
    Lupus stopped me working as a fitness instructor. However, I studied for something completely different and set up a charity with a friend helping others with difficult situations.
    I have a wonderful family my children are grown up now and understand what lupus is.

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