Wednesday, July 25, 2012

Blind(side)ed by Lupus - How was I to know!


After coming across the infographic I posted last Monday, in conjunction with an older post I did about a survey regarding diseases like lupus and how they affect decisions regarding pregnancy, I feel I need to make a point. (Nothing new, right?) 

According to the infographic, 63% of lupus patients polled say they decided to retire or quit work earlier than they had planned. And the findings of the survey showed that 64% of women with lupus who participated in the survey said they had fewer children then they had originally planned. 

Okay, so these are major decisions we’re talking about – life-altering kind of stuff that requires a complete change of plans and a big dose of acceptance. And it’s these kind of big lifestyle changes that I had no idea might be required when I was diagnosed with lupus. I didn’t understand that with a diagnosis like lupus, life as I’d known it was going to be different. I didn’t get that my lifelong plans were going to be altered, and that my goals, long and short term, might shift. I didn’t know I was going to have to do things differently, or that lupus was going to affect everything from the way I got dressed in the morning, to the cars I drove, to the way in which I interacted with people. “Life upheaval” wasn’t in any of the lupus literature I read, and so I didn’t even think to add it to the list.

I promise you – I wasn’t in denial, those issues just weren’t even on my radar. What did I think would be in store? Definitely a couple of prescriptions. Maybe a few dietary restrictions.  But as for an overhaul of the way I lived and breathed? No way.  

Of course, now, I’ve fully embraced my new way of doing things, and I think my contentedness stems from a combination of time, experience, as well as expectation.

Now that my expectations are set to include big and little changes, lifelong goal alterations and daily routine accommodations, it makes it much easier for me to "live normally", because I understand that my "norm" is now a "new norm".

And although I hate to be a resounding gong, that's why I wrote my book, and why I keep this blog. So that others who are diagnosed with lupus aren't blindsided down the road like I was. Ideally, you embrace the disease early on, and set your expectations for a new norm (not necessarily worse, just different), and then you begin to shape and rebuild your life around lupus, living well, despite it. 

2 comments:

Wendy said...

My favorite of all your posts. You really captured the weirdness of lupus and how it feels to have to adjust to a new reality. Around the time you wrote this post I came across an article about lupus by a prominent rheumatologist in which she emphasized huge progress that's been made in lupus treatment, now allowing most lupus patients to live a "normal lifestyle." I thought, "If you only knew...!" maybe my new lifestyle is normal from an outside perspective, but it's sure not normal for me--or for my husband who has taken up a ton of slack because I'm no longer able to do my share of the workload at home and at our business. Thanks for being my resource for understanding out here in this sparsely populated area where there are no lupus support groups! I visit your website whenever I need the little boost that comes from knowing I'm not alone. Love your book too!

Sara Gorman said...

Wendy - Thanks so much for commenting! I'm so glad you connected with this one, and it is true - a "normal lifestyle" is so relative. Sometimes it seems there's no end to the adjustments required with lupus...but other times, I do find myself quite settled into my new norm. Usually, it's when I realize that life is SOOOO much better than it used to be, and that while there's so much I can't do, there are so many things I can - and I didn't think I would ever return to this level of mobility, activity, or stability!