Thou Shalt Not Smile.

Uh-oh. It seems that I inadvertantly broke one of the Ten Chronic Illness Commandments the other day.

Thou. Shalt. Not. Smile.

I'm actually being a little sarcastic here. There aren't any Chronic Illness Commandments. Are there?

Recently I asked a non dizzy, social media savvy friend of mine, to take a look at my Facebook page.  I'm doing a bit of an overhaul and I valued her imput. After spending some time looking at my page, she called and said...."I think you might be smiling a little too much in your pictures", to which I replied "Doesn't everybody smile in their pictures?" I mean with the exception of your passport or a mugshot, aren't you supposed to smile in pictures? 

She went on to say that I could be 'misrepresenting' my vestibular disorder and doing a 'disservice' to the chronic illness community by smiling too much. 

Wait, what? Am I?

She concluded "you might want to show yourself looking a little bit sicker..."

Whoa. Okay, that's where I have to draw the line.

Now, while I wholeheartedly agree with her on some level - people do need to 'see' how bad this illness can be, I definately will not be making myself look sick just to convince people that I have an invisible disabilty. 

When we smile, people don't see that we're suffering.

I know there are quite a few chronic illness pages where people will post a picture of themselves on a bad day looking absolutely dreadful. And it's true that these pictures send a very strong and powerful message about how awful and debilitating this disorder can be. However, I personally do not wish to post pictures like this, for a couple of reasons:-

Firstly, when some people are sick, they actually look sick. I don't. Ever. Even on my worst days I don't look that bad. This disorder is invisible for all of us, but my dark brown skin tone adds yet another layer of invisibility. I don't turn pale or look washed out when I'm nauseous. I don't get red and flushed when I'm panicked or anxious. I just look the same. This illness does not reflect well on my face.

Secondly, all the people who follow my page are also dizzy too. They have the same bad days that I do and already know how awful it is. I don't think that posting pictures of myself during a flare would  either be inspiring or encouraging to them.

Finally, although I have a public page, I am a private person. I don't believe that everything needs to be posted on social media. People don't need to see the messiest side of my life in order for it to exist. I don't post pictures of my untidy bathroom, disorganized linen closet or garage full of junk either.

So, does a smile send the wrong message?

Perhaps. A smile can be misleading. Some would say that it minimizes the suffering or it suggests that you might be feeling better than you actually are. But does that mean that you should never smile then? The people who need to 'see' your illness in order to believe it, are probably the same ones who will no doubt say that you're faking it when presented with photographic evidence.

But maybe a smile tells another story...

If a woman is smiling while holding her newborn baby, it does not for a minute suggest that she therefore must have had a painfree and easy labour. A marathoner or endurance athlete smiles when crossing the finish line, but that doesn't take away what they had to endure in order to get there. In fact if anything it makes their smile so much sweeter. A smile can be an indication that you went through something that was painful or difficult and came through the other side. A smile can simply be an outward sign of an inner victory. Victory in the face of chronic illness.

All smiles - but both of us really struggled through this marathon.

Living with this disorder is hard. Isn't it enough that we have to have this condition for life without being told not to smile either? When vestibular neuritis forced me to sign the chronic illness agreement in June 2018, I never checked the box in the fine print that said I would agree to never smile again.

This is Facebook. Social media is the place where the majority of us try to show our best side. We take hundreds of vacation pictures and only post the best 12. We take about 10 selfies in order to get the perfect one. Aren't people with a chronic illness allowed to do that too? Can't we document our successes and healing without it being misinterpreted? There aren't that many pictures on my camera roll where I am smiling between 2018 and 2019, because I was so depressed and so very ill.  But last year I turned a corner and saw something in the distance...

...what I saw was hope - and that made me smile.

*And if you need evidence that I'm not always smiling you can read this post or this post*

Plot Twist

 

It would've been perfect. It could've been perfect. It should've been perfect.

But it wasn't.

At 3am on Christmas Day, with the snow falling, having the white Christmas that everyone dreams about...there I sat - bawling my eyes out.

Let me rewind a little...

The first signs of nausea started unexpectadly 6 hours earlier. I took some anti- nausea medication, hoping that it would pass. It didn't. By midnight, I was really dizzy and feeling sick. It felt as though I was sleeping on a waterbed. By 2am, whenever my husband turned over in bed, it felt like a tsunami. So eventually I got up and went to sit on the couch. I looked at all the unopened gifts underneath the Christmas tree and started to cry. I've come to know my symptoms. These were the classic telltale signs of a full on flare. And there was absolutely nothing I could do about it.

I'd been planning Christmas for weeks. I ate well, slept well, exercised well, paced myself, practised good time management, shopped online, avoided the mall, avoided stress, and was well prepared for everything. Everything that is, except actually getting sick on Christmas Day. 

Sometimes you can do everything right and it still goes wrong.

I was frustrated, disappointed, but mostly I was angry. Angry, because it seemed like all the preparations were for nothing. I mean seriously, there are 364 other days when I could've had a flare and it wouldn't have mattered as much. But it was Christmas Day. I'd made a new Sausage, Chestnut and Apple stuffing I was looking forward to trying and we'd planned some fun party games for after dinner. And now there would be none of that. At least not for me.

But I suppose that is the nature of this condition. It's unpredictable. The symptoms are sneaky and can come without warning. They can happen to anyone at anytime. Even people like me, who has spent the last year of my life trying to make lemonade from the 10 tonnes of lemons that were dumped on my doorstep when I got this miserable disorder. People like me, who try to view this disorder through a different lens and preach my own brand of Pinterest style positivity from my blog. The truth is sometimes you don't feel positive about it. At all.  This disorder just sucks and you have a right to be angry about it and work through those feelings.

For a while I sat there feeling sorry for myself. That is until I was haunted by the ghost of my Christmas past (2018 - most miserable Christmas ever - never be repeated) so I stopped right there and I didn't allow myself to give in and succumb to those feelings. I didn't want to sink to that level of despair. Christmas was still going to be fun for my family. And all the advance preparations helped to make things a little easier for them. I sat on the couch for most of the day giving instructions for dinner preparation and when it was ready, I sat down for dinner with them, even though I couldn't eat it myself. I wore the silly tissue paper party hat that comes in the Christmas crackers. I laughed at the corny jokes. Oh, and I even had a sip of muscato after my anti nausea meds kicked in (now, I don't recommend that you do that, but that's what I did!)

This was in my fortune cookie on Dec 29th - HA!!!

With this illness it is probably wise for me to expect that things could go wrong. I know that sounds pessimistic, perhaps even fatalistic. But personally I think that it is realistic. I've had to cancel too many events and activities to think otherwise. And like a woman at the end of the third trimester of pregnancy - with an emergency bag packed and sitting by the front door - you have to prepared and ready. Because...

Always be prepared for a plot twist. Prepare for the worst, but always hope for the best.

If it goes wrong, I won't be at all surprised, because I fully I expected it. But if it goes right...well, you better believe I'll write a nice postive post about it.

And by the way... the Boxing Day leftovers were great!