Living with vs accepting lupus

Marie is a 28 year-old nurse by training, but since her diagnosis of lupus, she has not ben able to practice nursing. In her guest post she discusses that she sees a difference between living with lupus and accepting lupus and what this means to her. She co-authors the website at:, which is a fun site to visit, so please go!

Hello, dear readers of Annie’s blog. I’m Marie and I’m glad to be here today to share with you my journey with lupus. Like Annie, I am a Registered Nurse, but unlike Annie, my practice lasted only 3 years before I was diagnosed with lupus.  You might say, 3 years is just a few years; but, it’s a LONG few years when you don’t know what is causing fatigue and other symptoms. It’s also long because and the reality of my diagnosis is slow to, how do you say, “Sink in?”

Let’s go back to 2 years ago, shall we?  I was caught in a storm that cascaded  into memories (almost all bad) that I’ll never forget, and I felt really betrayed.  First off, my family and I experienced the were caught in the biggest tropical Storm Sendong (if you haven’t heard about it, it was the Dec 2011 storm that hit in the Philippines where it harboured thousands of lives), we were some of the lucky survivors.  It was a stressful time for our family.  We lost everything. Imagine losing everything you have worked hard for.. EVERYTHING! That was tough but we thank God for keeping us safe.

After that incident, a new one came up, and this time it centered on me. I started to experience hair loss (and when I say hair loss it’s not just the a small amount that comes out when you comb your hair and wash it). it was hair falling out, even when I lay down on my bed. I’m not just talking about a few but rather more than 10, almost in clumps! (Yes, I do count them), and I also had puffy eyelids, and redness on my cheeks.

My colleagues at work found these changes in me very alarming and they kept asking whether I was all right. And I was; I really was. It’s just that I got tired easily (one sign of lupus) and other than that I was perfectly alright Finally, I went to see a doctor, and after laboratory workup I was diagnosed with Systemic Lupus Erythematosus .

As a nurse, I knew that lupus doesn’t have a cure and instantly, I knew I could die from one of it’s complications. Yes, I knew that the minute I received the diagnosis, so I changed my life by living each day, minute hour to the fullest. Am I such an ifralidg

It was really hard accepting the truth, but I perfectly mastered the strong façade in front of my family and loved ones. I told them that I had lupus and explained it to them. Of course, they didn’t believe me until they heard it straight from the doctors. I presume they were also in denial

Questions such as: Why me? Of all people, why me and why now? I’m just 26 planning to be married and planning to have children. So, why now? Why? Those questions until now are left unanswered. But one thing I that I’m certain of. Its God’s plan.  I don’t know what it is but I’m lifting it up to Him.

I haven’t accepted Lupus, even now.  But I’ve learned to live with it. Yes, there is a difference between learning to live with something and completely accepting something that you cannot change. I’ve given up trying to make my way with nursing as my profession and learned to accept and live a different career path.  It was very difficult at first, but eventually I learned to accept the fact that I couldn’t be a nurse in the hospital.

Thankfully, my SLE is under control. I know it won’t be like this forever but now I’m savouring every moment of it.

I have the lupus fog from time to time and having a planner and a journal makes it easier.  Sometimes, having lupus has its perks; like being free from errands that involve exposing me to Mr.  Sun. 

Stress is the one thing I have a hard time learning to live with.  As far as I can tell, no one person can be free from stress.  We experience stress in so many ways, it is just how we look through and react to the stresses it that we can lessen it, if not avoid it. I am still in the process of having my own coping-stress mechanism, having an outlet and discovering stress-free activities I could engage myself .

I do typography from time to time, and I do blogging.  I collaborate with my sister in blogging so please visit our blog at:, and its a blog for chic and informed teens.  I read self-help and inspirational books .

I know I can’t avoid stress and being under the sun especially that I live in a tropical place. I’m just very grateful to have a family that supports me and a boyfriend who understands me and is willing to go through my journey with lupus .

I guess that what makes me learn to live with Lupus.  I know I could accept it in time, but for now, I just have to learn to live with it .




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  1. Pingback: MONTH OF MAY: Lupus Awareness Month | DosMariasSays

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