Indestructibility isn't all it's cracked up to be

Destroyed. That's the current condition of my fingernails, since I removed the indestructible gel nail polish I blogged about a few weeks ago. In that last post, I really did consider adding a disclaimer that said, "I have yet to experience the nail polish removal please stay tuned", but I was just so taken with the polish that I convinced myself it would be an uneventful one. Well...I was wrong.

I've been nursing my nails back to health for about two weeks now...ever since I had the nail salon remove my second round of gel polish. I "removed" the first round myself, if you can call it that...which didn't go so well. But I was headed to the salon for another gel manicure a few days later, so I didn't panic. But having the professionals remove the polish the second time around still left my nails in complete ruin. What a downer!

Now, I'm not saying a gel polish manicure (similar to shellac polish, which you can read about here) is a bad idea. My nails just can't handle it more than a couple times a year. Turns out, most of my girlfriends say the same. Interesting how the truth eventually comes out!

So it seems a strong, unbreakable outer shell really isn't all fun and games, is it? And thus, my analogy between indestructible nails and life with lupus continues. (I know you were hoping it would!)

How many times have I looked totally healthy and perfectly put together on the outside (i.e. indestructible), when all the while my internal organs were literally falling apart on the inside? I remember countless examples when my disease activity was ramped up to the hilt, but there wasn't a single external sign that lupus was afoot. How conflicted was I when that would happen? You feel sick, you ARE sick, but you don't look sick. How do you play that off? How do you explain it to others? How do you reconcile that within yourself?

Over time, I learned and decided to take the following approach:

1) Listen to my body and act accordingly. Regardless of how well I look, or how healthy others think I may be, if I'm tired, swollen, or achy, I do what I need to do to make myself comfortable and get myself well. No matter how strong and resilient I want to be, I have to remember the wreckage that's going to be left behind if I don't act responsibly.

2) Don't worry about what others think. I know - it's the oldest advice in the book, and probably the hardest to follow. But really - if I worried about what my babysitters thought about me lying in bed for two hours every afternoon, or what my friends thought about me not being able to make plans in the afternoon, or what anyone thinks about me taking a slew of medication, hiring an au pair to help me stay well, or skipping out on volunteering at Deirdre's school because I can't spread myself too thin, I'd be a mess. I wouldn't be able to keep this blog, promote my book, sell my pillbags, OR most likely have my kids, because I'd be too worried about putting on a good show (i.e. an indestructible one) to stay healthy. And how unproductive, stressful, and pointless is that? So when people don't understand, don't feel like you're alone. Find your way to places like my blog, an LFA patient forum, or a good support group, and remind yourself that you're on the right track. (Check out "The Fairy and the Wolf" for more on this exact sentiment. The illustrations and text say it all!)

3) And just as importantly as #1 and #2, I appreciate the fact that I don't look sick. Listen - I know what it's like to have to convince people that I'm sick. I understand first-hand how difficult it is to hear the, "But you don't look sick" comment, while enduring the silent "So you shouldn't act sick" judgment.  But if we're going to find even a sliver of hope in the deep dark crevices that lupus often brings, we're going to have to look in the mirror, and say a teeny tiny thank you that, for the most part, we don't wear our disease on the outside. (Goodness knows how unflattering "damaged kidneys", "fluid around the lungs", or "blood clotting issues" might look!) I know having an invisible disease can sometimes make life more difficult than if you could spy from a mile away that we are sick, but 99% of the time, I'd rather fly under the radar.

So there you go. I think that's about all I can squeeze out about gel nail polish and living well, despite lupus. But you never know...


Lauren said…
Just wanted to say that if you put colorless iodine on just the tip of your nails for about 2-3 weeks then once a week thereafter if should make the tips strong. But you should not use nail polish during this time.
Sara Gorman said…
Thanks for the tip...literally! :)
Anonymous said…
Hi Sara,

I am struggling with flare after flare and other than an easily covered rash and a bit of a limp I look healthy. I have attempted to approach my boss about accompdation like working from home someof the time but I think because I look fine he thinks I am fine. I would greatly appreciate any advice you can give on this,
Sara Gorman said…
Megan - as I just mentioned in a recent post, i think approaching your employer about accommodations can be one of the hardest things we have to do as lupites. But it can be done - I think you just have to strategize. :) Of course, every situation is different, but I can give you a few things to consider:
1) Think about solutions. Try to keep in mind that if you present him with a problem (your illness and need to work from home), you need to present a solution at the same time (your work will be of a higher quality, you'll be able to contribute more because you'll be well, etc. etc.)
2) Try to honestly evaluate your present situation: are you doing your job adequately, but don't want to slip in performance? Is your performance already slipping and you just don't want it to affect the company? Whatever your current situation is, you need to think it through before you go into to talk. You can use it to help your cause, or as a reason that you need the accommodation. (Again - think long and hard about this one. You don't want to say your work's not affected if it is...)
3) Propose a time frame. Let him know that you understand there may need to be a trial period to see if it works for him.
4) Think like an employer. Of course, you're making this accommodation suggestion for yourself, but you're also making it for the good of the company. you want to be the best employee you can be, and by working from home, you think that's the best way you can still contribute. You don't want to become debilitated to the point that you cannot contribute at all...
5) Lastly, role play. I'd grab a friend, spouse, or family member and practice. It makes it a lot easier!

You could also consider checking out, and Rosalind Joffe, who's a chronic illness career coach. Best of luck, and take care!

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