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Coping with Lupus is far from easy as the Lupus journey, amongst other chronic illnesses, is not linear and doesn’t have a specific path or destination and is full of ups and downs, with lots of surprises—both good and not-so-good—along the way, demanding demands of resilience, adaptation, and a strong spirit. When I got diagnosed with Lupus, I was in my mid-twenties and, despite my mother also having Lupus, did not know as much as I should have about this disease.
As a forty-something-year-old lupus warrior, I have travelled paths that have evaluated my limits and helped redefine my perspective on life. Yes, Lupus is an unpredictable autoimmune disease, but it has taught me profound lessons about strength, self-love, and the importance of community.
Check out Living with Lupus – The Lesser Known Side of the Story
Coping with Lupus: Find Joy In Everyday Moments
Lupus has taught me to find joy in life’s little moments, whether finding a missing sock or getting a good sale at the mall. These were mundane things that I never thought twice about before getting sick, but now I cherish the simple things that make me smile and feel giddy. These moments remind me of life’s beauty, even amid illness, and they can also bring joy and hope to your life.
Have a look at these 10 Celebrities Living With Lupus And Thriving.
Coping with Lupus: Resilience Is Your Best Tool For Tough Times
Getting diagnosed with Lupus made life more challenging, and it was only then that I truly understood the power of resilience. Lupus taught me that I always had a choice. It was not just about enduring pain or setbacks but also about finding ways to rise despite them. There have been so many days when I was exhausted or in a flare, and the most mundane tasks were complex. However, I learned to adapt. Whether it was pacing myself or just learning to rest without feeling guilt. Lupus gave me the strength to keep moving forward, which I want to share with others to empower them in their own journey.
Coping with Lupus: Listening To Your Body Is Imperative
I am always on the go and will do whatever it takes to stay active in my social life, including clubbing at least three times a week. However, living with Lupus has taught me the importance of genuinely listening to my body. I’ve learned what triggers my symptoms and discovered ways to manage their effects. I also recognise that pushing myself too hard can lead to flare-ups, which I still sometimes do, resulting in days of discomfort. Now, I view prioritising rest not as a sign of weakness but as an essential act of self-preservation.
Signs of Lupus You Shouldn’t Ignore
Coping With Lupus: Self-care is not Selfish; It Is Paramount
I have always known that self-care is essential, but I often prioritised what seemed like more pressing matters over taking care of myself.
My experience coping with Lupus forced me to reevaluate this mindset. I realised that self-care is not a luxury; it’s a necessity. I practice self-care daily by making time for a long, relaxing soak, reading an interesting book, applying a face mask, or even taking an afternoon nap.
These activities are great ways to recharge and relax amidst the chaos of everyday life. I encourage everyone to prioritise self-care, as it helps us feel validated and understood in our struggles.
Why not try some of these 18 Quick Self-Care Tips for Bad Health Days
Coping With Lupus: Accepting Help Makes You Stronger
The journey with Lupus can feel lonely, even with the support of family and friends. Especially when they honestly do not know what we are going through. So, finding people like me who understood my struggles was helpful. I have connected with many lupus warriors worldwide through social media and the internet. Their help and support, plus my family and friends, contributed towards creating a community of hope and joy, where experiences can be shared, support is available during flares even if it is a kind word or WhatsApp app message, and most importantly, victories, no matter how small celebrated. This community reminds me that I am never alone in this journey.
Coping With Lupus: Goals Do not Have To Be Set In Stone
Living with Lupus often requires reimagining what success truly means. Before my diagnosis, I had a clear life plan. I envisioned myself as the Black Carrie Bradshaw—working hard, playing hard, travelling the world, and looking fantastic. However, Lupus disrupted those plans, forcing me to move away from the party-girl lifestyle I once desired.
Since then, I have learned the importance of pivoting and finding a new path in life. This new direction has led me to focus more on my family, health, and well-being. I had to set realistic goals and let go of my previous expectations to embrace the future.
Coping With Lupus: The Power Of Advocacy In Everyday Life
One of the most empowering lessons I have learned is the importance of self-advocacy. I initially was just naïve, but I genuinely thought that our healthcare professionals had our best interest at heart. But, throughout this journey, I had my mother to advocate for me in the early days while I learned to advocate for myself. I have since learned that I am my best advocate, and it is up to me to be vocal and be heard. Raising awareness about Lupus has also been fantastic, helping to combat misconceptions such as ‘lupus is just a skin disease’ or ‘Lupus is not a serious illness ‘and creating a more understanding world for those with chronic diseases.
Check out these Essential Tools To Help You Self-Advocate Effectively
Coping with Lupus: The Importance Of Raising Lupus Awareness
Many of my family and close friends still struggle to understand why I frequently cancel plans. They often ask questions like, “Why are you always sick?” This can be pretty disheartening. My work colleagues typically have little understanding of my situation as well.
As someone living with Lupus, I know that it is a lonely and frustrating disease, mainly due to the chronic lack of understanding from others. After years of trying to hide my condition, I eventually realised that I needed to play my part in raising awareness about our ongoing struggle with the invisible monster that is Lupus. It’s time to start a dialogue about this issue.
Find out about my My Insane Tandem Skydive Experience for Lupus UK
Remember, together, we can make our voices heard.
The Hidden Gifts Of Living With Lupus
At 42, Lupus has influenced my life in ways I could never have imagined. For instance, I no longer find clubbing appealing, and I was inspired to buy my own home, which I achieved in 2015! This decision introduced me to new interests, such as crafting, decorating, and interior design. Ultimately, this experience has made me a stronger person.
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 personal journey with Lupus. They are shared for the specific purpose of educating and informing other Lupus warriors, helping them find their own coping mechanisms.
Please note that this is not medical advice for any specific condition or situation. Wots Her Name Again? should not be used or relied upon to diagnose or treat a problem, disease, or medical condition.
It is crucial to remember that your licensed physician or healthcare professional is the only one who can provide the necessary guidance and address your concerns and questions about Lupus, its diagnosis and treatment. Their expertise is invaluable.
Resources For Navigating Lupus
If you or a loved one is being diagnosed with Lupus and needs further assistance or information, these reliable and trusted resources can provide the help you need.
Lupus UK is a voluntary organisation in the United Kingdom that plays a crucial role in providing information and support to individuals affected by systemic lupus erythematosus (SLE).
The Lupus Trust (previously the St Thomas Lupus Trust) was established to fund vital research into Lupus and provide information on the condition.
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.
