It was a simple conversation with one of my colleagues about having Lupus, and we probably should have been working as the inspiration for this post. I won’t quote the whole conversation long enough. If I was honest, I was being told off, the short. Share: I suffer from Systemic Lupus Erythematosus and was concerned that I kept trying to push myself to keep up with the other colleagues that I could not stop titling my condition. I call this lady my work Auntie, as she can always tell when I’m feeling unwell or having a flare, and she is the first one to ask me to slow down. While I know she didn’t use the term ‘belittling’ to insult me or be derogatory. I knew exactly what she was trying to say. Since that innocent conversation in the car, I’ve been thinking about what she said a lot. 

Do I have a habit of downplaying my condition?

Now, for those who are new to my blog or for those who don’t know much about me, I have Systemic Lupus Erythematosus, a chronic autoimmune disease. It occurs when your body’s immune system attacks your tissues and organs12345. Lupus can cause inflammation and pain in any part of your body and affect many body systems, including your joints, skin, kidneys, blood cells, brain, heart, and lungs1. Lupus most commonly affects the skin, joints, and internal organs5.

Reflecting on that car conversation, I couldn’t shake off what my Mam said. Deep down, I knew that it was possibly true. I am fully aware of the seriousness of Systemic Lupus Erythematosus, and I don’t deny that. But I think that the reason I downplay my illness is a conscious choice, a way of not letting it control me. It’s a way of showing that I’m more than my illness and that I can still live a whole life despite it. 

Why choose to highlight or talk about having SLE?

I don’t go around with a sign around my neck declaring that I have an illness. I don’t choose to be so open about it unless I need to. I want to keep Systemic Lupus Erythematosus at home. I don’t want to take it everywhere with me. However, I have some understanding from my friends and family, especially when I have made planes but have to cancel because I am having a flare or I’m too tired. I talk about Lupus if someone asks me how I am and my health. I will try to be as brief as possible and not divulge too much information, as I don’t want to be the Debbie downer. 

This may sound like I have a sense of shame for having Lupus, and at one point in time, I guess I would say I did; however, now that is in no way true. However, I’m proud that I managed to conquer this illness every day and overcome every obstacle thrown at me. I miss Lupus Lee-Anne and the adventures she could get up to without being tired, having joint pain, muscle weakness or the other lovely symptoms Lupus offers.

However, I try to make a conscious effort to turn as many negatives into positives. For example, I recently completed a Skyjump to raise money for Lupus UK. I have had a few fellow bloggers praise me for raising awareness of Lupus, as they didn’t know much about it until they followed me. That’s quite a proud moment for me. I try to think of what information I didn’t have and share things I have learnt about living with Lupus and some of my coping mechanisms with those who are at the beginning of their Lupus journey.

Even when my health isn’t at its best, I try to stay optimistic. I don’t delve too far into the nitty-gritty unless necessary, such as when my health is playing up. I don’t want to whine or moan, so I try to stay positive, even when it’s a struggle. This optimism is crucial to managing my illness, and I hope it can inspire others to do the same. 

To be fair, I feel well and have reasonable control over my health; I don’t need to elaborate further. That could be what my college meant about me belittling and downplaying my illness. It’s not that I don’t take Systemic Lupus Erythematosus seriously or do not fully comprehend its severity because Systemic Lupus Erythematosus regularly shows me whose boss. It’s just that I won’t elaborate unless necessary. I’m not downplaying it; it’s just that I don’t like to bring it to the centre of attention.

I’d love to hear your thoughts and experiences if you’re comfortable. Do you, like me, have a chronic illness that you sometimes downplay? Or have you found a different way to navigate it? Please share in the comments below. Let’s start a conversation about how we handle our chronic illnesses.

Thank you for taking the time to read and share your thoughts. Your engagement means a lot to me and to others who may be going through similar experiences.

Discover more about my journey with Lupus by checking out these insightful posts:

• Lupus Symptoms: 22 Signs of Lupus You Shouldn’t Ignore
• ThisIsLupus:11 Essential Tools To Help You Self-Advocate Effectively
• 9 Important Facts for Family & Friends Of Lupus Sufferers
• How to Support Someone with Lupus?
• What Not To Say To Someone With Lupus
• Living with Lupus – The Lesser Known Side of the Story

Disclaimer:

The information and tips in this post are based on my experiences and are provided for general information and educational purposes to aid other Lupus warriors in finding their own coping mechanisms. They do not constitute medical advice for any specific medical condition or situation. This Wots Her Name Again? should not be used or relied upon to diagnose or treat a problem, disease, or medical condition.

Discover Valuable Resources for Navigating Lupus – Your Guide to More Support:

Rest assured, if you or a loved one are diagnosed with Lupus and need further assistance or information, these reliable and trusted resources can provide the help you need.

Lupus UK

Lupus UK: A Key Resource for Those Affected by SLE Lupus UK is a voluntary organization in the United Kingdom that crucially provides information and support to individuals affected by systemic lupus erythematosus (SLE).

Lupus Trust

The Lupus Trust (previously St Thomas Lupus Trust) is dedicated to supporting lupus research at Guy’s Hospital and raising awareness of

Hibbs Lupus Trust

A Personal Journey Turned into a Mission The Hibbs Lupus Trust, a registered charity founded in 2011 by the Hibbs family, was born from a personal journey with Lupus and a strong desire to create meaningful change.