Certain about how good life with lupus can be? Now I am!

The year I was writing my book (2008), I heard a bible verse read at mass, and I immediately knew it would find a place somewhere within the pages of "Despite Lupus". It ended up in Chapter 1, called "Choose Wisely", and here's the excerpt surrounding the verse:

Good choices inspire, heal and empower. The specific choices that we will be discussing in this book will change the way you look and feel; the way you view yourself and the world around you. You’ll be a changed person, a different person, a better person. You’ll feel good about who you are and the possibilities before you, allowing you to become a better spouse, parent, child, co-worker, or peer. You’ll reach a new level of understanding and have the opportunity to expand your horizons, growing as an individual. You’ll have found the inner peace that allows you to become the person
you’re truly capable of becoming, and nothing less than the best. Up until now, lupus has squashed all signs of that good life. But when you choose to have hope, you’ll be able to see and believe that life can and will be manageable, fulfilling, and worth living.
"Affliction produces endurance, and endurance, proven character,
and proven character, hope, and hope does not disappoint."
Romans 5: 3-5
Think back to the hardships you’ve encountered up to this point. Beyond the physical torment caused by joint pain, fevers, swelling, skin rashes, poor circulation, chest pain, headaches, sore throat, swollen glands, photosensitivity, heartburn, mysterious lumps and bruises, dizziness, nausea, infections, kidney, heart and lung problems, you have tolerated enormous mental trauma including: the embarrassment of hair loss, memory problems, and cloudy thinking; the inconsistent and inexplicable nature of your symptoms; the sacrificed activities, the missed little moments and forgone milestones. Consider the effort that lupus has demanded from you to attend to the never-ending doctor’s visits, medical tests, and health questionnaires. (Admit it: those hospital admittance papers and new patient forms can be a major pain, especially when you’re checking off every single box under “Symptoms experienced in the last three months.” You even have to write in a few that they’ve left off the sheet, don’t you?) By anyone’s standards, you’ve done your time with hardship, and you’re an expert at enduring. Now let’s turn to the future. It’s time to strive for more. It’s time to strive to be well.


This past Sunday, I heard the verse read again, after almost 5 years. I instantly recognized it, of course, but just as quickly, I realized how much I had changed since I heard it last.

Back then, the physical pain and emotional heartache of lupus was fresh in my mind, thus the concept of "affliction" was all too real. I had definitely "endured" my fair share of trauma, and I remember thinking how accurately the verse was structured, with each part bleeding and building into the next. I remember thinking the phrase "proven character" was such a nice way of describing the maturity I'd witnessed in myself - merely a by-product of all that I'd experienced at a young age. Lastly, I remember feeling hopeful -  sure that life with lupus would continue to improve. I was optimistic about the future - but looking back, I now know that I had no idea how good it could be.  Back then, I was confident, but not certain. I was hopeful, but perhaps not convinced. 

Today - I know that I should expect life to be good. There's nothing to fear, as long as I keep up my end of the bargain of trying to live well, despite lupus. (See Chapters 2-8 of D.L. for details!)  I now have evidence that my life with lupus can be one worth living, and I have faith that it will continue to be so. That feeling of certainty is a wonderful, wonderful thing.  




Aymie said…
A very timely and apt post!
My first massive lupus flare was nearly five years ago... I was about to go into my final year of uni to study for something that had been my life long goal and I had to give it up. I watched my friends graduate, move on with their lives, get proper jobs, settle down, start having families and everything that comes with being a responsible adult, all while I was struggling to stand.
On Thursday I graduated with the blessing of my professor. I'm about to go on the hunt for postgraduate funding and hopefully do research in an area that fascinates me. The man I'm going to spend the rest of my life with has just gone home after spending a fantastic day together. Not only can I stand again, but I walk at least five miles every weekend and I'm planning to take up road cycling soon. I heard the wonderful word 'remission' at my last appointment, the word that everyone with lupus wants to hear at least once.

I'm not saying that life with lupus is easy, it took me five years, a lot of pain, hard work and determination, but I've got some sort of a good life back again. But a good life is possible. Yes, I still have lupus, but it isn't the centre of my life now and I'm (more) proof that changing and adapting your lifestyle can make things a lot easier.
Sara Gorman said…
Congratulations!!! so happy (and proud) of you for perservering. This comment made my week--i'm so happy you're in a good place and you're thriving. it really CAN happen, right? thanks so much for sharing!!

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