Rethinking Hospitality


Rethinking

I know that I see a ton of great blog posts that address opening your home and serving food as a way of showing Biblical hospitality. There are a lot of verses that support the home as the center of Christian hospitality. (Here is a great resource!) As we just passed Thanksgiving and are getting close to Christmas, I would like to address some other ways of thinking of hospitality.

There are a myriad of reason that people are unable to leave their homes or travel to your home. Some of these people may seem perfectly healthy, but invisible illnesses or social anxiety can contribute to isolation. According to the CDC 1 in 2 American adults suffer from a chronic illness. Not all people are housebound, but sometimes it can be difficult for people to make it to dinner after working, on a bad day, or a flare in symptoms. The CDC says that a quarter of people with chronic illnesses have significant limitations in their daily activities.

I would encourage people who read this to think about their peers, their neighbors, coworkers, and members of their churches. They may be people that you interact with on a daily basis–people who you see every Sunday morning–people you wave to as you go to work. What you might not realize is that attending church on Sunday morning wipes them out for the rest of the day; working a full day is more than they can do without damaging their health; or that you wave to them in the neighborhood, and they really wish that you would be a friend because being sick is very lonely. As I get older, I know that family is so very important, but there is still the 26 year old in me who wants friends. I want girls to laugh with, talk about make up with, and generally have a good time. My “good time,” though, looks a lot different than it did before I got sick. Now a good time is a movie night, not trying to get to three Christmas parties in one night.

I know that when I was in middle school, my Sunday school class would go visit the church members who were homebound; however, there are many people who are much younger that need some extra attention and care. I know that no one purposefully leaves their 20-something friends out, but not every 20-something has the physical capabilities that other people have.

Tips for Hospitality:

+ Be understanding when someone has to cancel at the last minute.
+ If you know someone is sick, offer to bring them food. If they don’t need food, just the offer can bring them a lot of joy because they won’t feel abandoned.
+ Try to plan events that would allow a sick person to be more comfortable. A dinner that is drop in or not on a Friday night would be a good alternative.
+ Ask your friend how you can help them! Maybe they would like a Christmas tree, but decorating the tree might pose a problem. Bringing cookies, sharing some hot chocolate, and decorating a tree would be very fun. They may need help shopping for Christmas gifts, wrapping presents, or even unpacking the Christmas decorations.
+ Meet your friend for coffee/hot chocolate. Sometimes it is nice for a sick person to get out of the house, but they can’t be gone for long. And one on one might be better for some people.

+Think about non-food centered, restful activities:

-Christmas movie night
-Ornament decorating (this allows for sitting down and standing up as needed)
-Assembling gifts for charity (example: Operation Christmas Child, etc.)
-A relaxed game night or afternoon. Something like Apples to Apples or Scategories. Laughing is great medicine. Prolonged strategy games can be too exhausting.
-Anything that is on a Saturday or Sunday afternoon might be easier for people who have a hard time getting up and are exhausted by the evening.

People suffering from chronic illnesses are also likely to be very isolated. So, if someone who is chronically ill has you in their life, they are very blessed. You can easily increase the blessings in their life by being purposeful in showing them hospitality in the season of celebration.

Categories: Cervical Dystonia, Health, Holidays, Sick, Tips
But You Don’t Look Sick: An Open Letter


[Note: This post was updated on 1/12/2015, upon further reflection of the subject.]

So, I’ve been sick a few more months than when I originally wrote this post. Every single day, I learn more about what it’s like to be chronically ill and live with all of the ups and downs related to my conditions, as they take turns flaring and receding. I wonder if the conditions use some sort of lottery system, but I digress. Anyway, I’ve put some more thought into this post and updated it, hopefully for the benefit of all the sick and healthy people everywhere. As I talk to more people with chronic conditions and see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person.

but you don't look sick open letter

Hi there,

You may have just met me. You might be my good friend. You might even be my family member. I just wanted to take a moment to talk to you about the phrase “you don’t look sick.” You know what, you’ve never seen me at home alone. So, yeah, I don’t look sick right at this second. To borrow a phrase from the ever wonderful writer Ariane, my pants should not have to match my pain level. Sometimes, putting on a dress helps my mood, even if it doesn’t help my pain. I’m sorry if that conflicts with your idea of looking sick.

I don’t mean to sound ungrateful for what you mean as a compliment, but it is kind of insulting. The phrase you don’t look sick minimizes and dismisses my pain. So, if we just met, and I opened up to you about my painful neurological condition (and I didn’t even mention the other conditions with which I live), please don’t think you’re complimenting me. If you follow it up with “but you’re so beautiful,” you are unknowingly implying that being sick should make me ugly. Maybe you think I’m exaggerating my pain because you perceive me as beautiful. Beauty fades, but my pain won’t.

This letter is not about only me, either. By telling me that I don’t look sick and that I’m beautiful, you are reinforcing the idea that if anyone wants his or her medical conditions taken seriously she should look a certain way. Maybe I should not take any pride in my appearance if I am sick, so your conceptions of illness and my illness will fit together. The preconceived notions of what being chronically ill looks like is what prevents people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with dignity. There are people who cannot even get the much needed family support during their illnesses because their families do not understand that being sick can present in many different ways. Sick looks different for different people on different days.

I would like you to know that it probably took me twice as long to look passable for public viewing than it did before I got sick. Instead of wearing contacts, styling my hair, putting on make up, and wearing an outfit that isn’t entirely from the “active wear” department absolutely every day, like I did in the past, I only do that once or twice a month. [Side note: We can talk about the irony of wearing active wear in my condition later.] You don’t see me at home. You don’t see me the way my family does. My situation is so excruciatingly embarrassing that even my doctors do not see all of the pain. My mask is reinforced by years of negative experiences with showing vulnerability. I dread necessary doctors’ appointments because I know that it will mean that I have to take a shower with energy that I do not have.

I only let you see what I want you to see because you would be uncomfortable with the truth. Plus, I do not want to be humiliated. I want to be treated with dignity. So, I only leave my house when I can be presentable, which is not often. Therefore, I become isolated and lonely because I don’t have energy to make myself look like my former self. There should not be any stigma when I can’t wash my hair because I am that sick, but there is judgement because you can’t see my whole story in a glance. That’s why you only see me when I don’t look sick.

If you are another person with Dystonia, I feel really bad for you. We share a common bond, which I thought you would appreciate. But when you tell me that I don’t look like I have Dystonia, just because Botox helps me to hold my head straight for 8 out of every 12 weeks, you are insulting me, too. I am sorry if Botox doesn’t help you hold your head straight, but I experience life altering pain, just like you.

I also want to take a minute to address a few more problems with the phrase you don’t look sick. You may know about my illness from my blog or from me telling you about it. Either way, neither on my blog or in conversation, do I lay out my entire medical history. I can’t even explain it all to a single doctor during an hour long visit, even if I bring notes and timeline. I don’t tell you about the hours and money that have gone into biofeedback and neurofeedback, the tests that I’ve had run, and all the extra things that I require to maintain a manageable pain level. I’ll never tell you how many doctor visits that I average a week or how many pills that I’ve tried and had horrible side effects or allergic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with you — yes, I have been turned away by primary care doctors because I’m too complicated — they either throw a lot of pills at me or they take their frustrations out on me by yelling at me. It may sound crazy to you, but you probably only see the doctor when you have a sinus infection. So, in addition to dealing with pain and being sick, I deal with more frustrations than you could ever imagine. When I first got sick and didn’t understand why the doctors were yelling at me, it felt like I was slowly losing my sanity. That makes me feel even worse. So maybe I brush my hair and try to look ok when I leave the house, but I carry so much pain behind the facade.

When I hold my head straight really quickly, so someone can take a picture, because I’m wearing makeup and plucked my eyebrows for the first time in two months, don’t think that’s my everyday experience. I go out of my way to document the moments that I can enjoy life, so when everyone else is living life, and I am alone in the recliner, I can see some evidence of that one time I enjoyed playing with my dogs at my grandparents’ house.

So, I if you’re a close friend or family member, I appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you don’t think I look sick, you aren’t complimenting me.

Thanks,

Sarah

Related Posts:
Rethinking Hospitality (for the Chronically Ill)
Cervical Dystonia
Managing Cervical Dystonia Pain
Invisible Illness

Categories: Cervical Dystonia, EDS, Sick Tags: , , ,
Slow Days

sick day

I’m not talking about the violently ill, throwing up from the flu kind of sick days. Those suck. No way around it!

I’m here to give a few tips for surviving those last few days. Whether it’s chronic illness, post operation, or just a weird summer cold–or maybe it’s raining all day Saturday and you just don’t feel like leaving the house!

Obvious Tips:

  • Netflix binge. We all know you’ve been dying to see Dawson’s Creek from start to finish.
  • Eat junk food. Serotonin. It’s science.
  • Read a book. If you are a bookworm like me, you have more books on your shelf than you might ever read, so finish up what you’ve got going on and read some more!

Other Favorites:

  • Turn on your favorite music. If you’re anything like me, you don’t listen to nearly as much music as you did in the good old days. Turn iTunes on shuffle and just enjoy listening to your favorites!
  • Meal planning. I tend to put this off, but if I can sit up and use Google/Pinterest, I can usually pull together 5-6 crockpot recipes and a grocery list for my husband. That way, we can get cooking the next weekend.
  • Sit outside. If it’s the summer, I like to wait till it cools off in the evening and get a little bit of sunshine. It warms my always cold body and boosts my mood.
  • Along the meal planning and organizing lines, I like to fill out my calendar. It’s usually wishful thinking, but I’ll figure out when the next Pops in the Parks is, when it might be a good Saturday to go to the farmer’s market, or when I can visit my grandparents. I’ll be honest, most of my plans don’t work out, but they do give me something to potentially look forward to.
  • Call your family. If I’m feeling well enough to talk, my grandparents love it when I call.
  • I also email all of my friends. They’re probably sick of it. 🙂
  • Of course, I jot down all of my new blog post ideas.

How do you stay sane when you’re stuck in the house? I always wish I could use the time to clean the floors, organize clothes, etc., but the last time I did that, I hit my appendectomy stitches with the mop handle! 

Categories: life thoughts, Sick, Tips Tags: , ,