Lupus help: Ask and you shall receive. (The hard part is asking!)

When it came to asking for help with lupus, I used to be quite shy (read: stubborn) about it. I didn't like that there were things I could no longer do for myself. And I really struggled with the emerging need for "accommodation" - be it at work, home, or in my personal life. The sudden reliance on others, the loss of independence, and the fact that I needed special treatment made me feel puny, powerless, and resentful.

But...I learned to work through those feelings. I realized that by making small changes to my lifestyle,
and in requesting help and accommodation from others, I'm enabling myself to successfully manage my disease.  This realization was so important that I dedicated an entire chapter to the subject of asking for and accepting help in my book, Despite Lupus.

I've talked about accepting help on this blog before - and you can read about some of those posts here. Over time, it's become much easier to reach out for help - mostly because the more you do it, the more often you experience the healthy benefits of doing so. But also because people are more obliging than I ever thought they would be.

I'm often reminded of this when I travel, because I consistently ask for accommodations, specifically at hotels. I've posted about traveling with lupus before here, and I've mentioned how helpful my husband is when it comes to arranging our travel around my daily nap. But sometimes, flight schedules and check-out times don't mesh with my sleep needs. And when they don't, I muster up the courage to ask for an accommodation.

Asking for an early check-in or an extended stay used to be a hand-wringing, sweat-inducing experience for me. It was a task that I preferred to pawn off on my husband, or my sister, if possible. But today, I know the worst the front desk can say is "No", and the best is that they say "Absolutely." Not only do I have the chance to fit in my nap, and manage my disease the way I would at home, I have the opportunity to teach someone about life with lupus. By asking, I'm informing. I'm creating awareness about the disease, and perhaps I'm paving the way for the next lupite to ask for, and receive, help in the future. Maybe we can all #makelupusfamous, one "ask" at a time!

I've had a string of smooth and successful hotel nap accommodations recently - and I thought I'd share a few tips on how I typically maneuver the "ask":

1) Plan ahead.

Once your travel arrangements have been made, you can determine if and when you will need extra time in the hotel room to accommodate additional rest. This could mean requesting to get into a room earlier than the standard check in time, or asking for extra time beyond an extended check out time. In either case, you want to set yourself up for success by referring to the need early and often. Mention the request after you book the room, but do so gently, and be sure not to expect any guarantees at this point. If you're booking more than a day in advance, it's unlikely that a hotel can promise any sort of special accommodation. (And if they do, be skeptical. It may be a new attendant at the desk!) But at least a note can be included in your booking, and you've set the stage.

If you're requesting early check in - it's imperative to call the morning of the booking, so that the cleaning staff can plan accordingly. It may also be advantageous to call on the way from the airport to the hotel...just to remind the staff that you're arriving soon.  Most hotels can move things around so that upon check-in, YOUR room is one that was cleaned first.

2) Ask with confidence, but don't make demands:

Just like with anything - kindness counts. Once you've arrived at the hotel, be courteous throughout your stay. No one likes to grant special privileges to the rude, disruptive guest! A day before you need the special accommodation, such as a late, late check out, approach (don't call) the front desk. (I used to detest the in-person thing, but it really does help!) Be courteous, say hello, and mention that you have a question. State that you have a disease called systemic lupus (I think the systemic part gives it a little gravitas), and casually ask if the desk clerk know what that is. Whether or not you get affirmation, continue confidently by saying that it's a disease that requires you to take a nap every afternoon. Ask if there's any way that you can have your room for an extra hour or two so that you can rest. Express your appreciation for any accommodation that can be made.

When you make this "Day-before" request, you're really just setting the stage again. Usually, the response is that "every effort will be made to accommodate your request", but that the best thing is for you to call down the next morning between 9-10am, and they'll see what they can do for you. Thank them for their time, and then be sure to call down between 9-10am the next morning.

The next morning, you can either call, or go down in person, depending on whether you'll need to make your pitch to another desk clerk.

3) Make accommodations yourself

Once you've made the initial request, and the hotel staff responds, or starts checking the computer, you can add detail. Mention that you usually nap from 2-4pm, but that you can make it work earlier if necessary. Mention that any extra time will really make a huge difference, and any place to rest quietly will work. You're willing to work with whatever they can get you.

If you're mentioning a request upon check in, be prepared to change rooms, or locations within the hotel in order to have the best chance at getting the accommodation.

4) Offer a Plan B

Let's say your room isn't available. Offer up another solution. Maybe there's another space you could use. Maybe they have a spa area where you can hang out for a nominal fee. Maybe you can just rest poolside, still having access to the hotel. Even if they just hold your bags while you can get some shut eye in a quiet lounge area, you've made your life easier.

5) Work out logistics

Hopefully, the answer is one that leaves you with a suitable place to rest. If the clerk confirms you can have your room until X o'clock, be sure to thank them accordingly. Explain how helpful this will be, and assure them that you will be out by that time. Now make sure you figure out the details - whether or not the room key will work beyond normal check out time, what to do regarding check out, etc. Ask if there's anyone else you'll need to inform. And whatever you do, use the room as you promised you would. Don't abuse the privilege.


On Friday, I'll share pictures of another napping accommodation that I requested before a recent speaking engagement. It was heavenly, and will inspire us all to keep asking, in the quest for the most perfect napping spot ever!


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