Faces of invisible illness

Life with chronic illness has changed so much because of the internet. Between blogs, Facebook groups and hashtags, you can always find someone facing the same challenges as you and feeling the same jumble of emotions. It might sound really strange to a lot of you, but some of my closest friends I have never actually seen face to face. Many of them I don’t even know what their voices sound like! When you live out in the real world and are able to go to school, maintain a job and go out with friends, your friends live out in the real world with you. But when all of that slips away and you find yourself seeing your doctors more often than your peers, a lot of your friends start to live in your computer.

One of my favourite people in this world lives in my phone and my computer. Okay, she actually lives in Pennsylvania, but within the realm of our friendship, she lives in my phone and my computer. We’re less than a year apart, we’re in very similar health situations, we led very similar pre-sick lives and most importantly, we get each other. Normally, I would now show you a picture of us together, but we’ve never met! At least not yet.

Day to day, Leah and I crack a lot of jokes, use a lot of sarcasm, and share a lot of memes and cute polar bear videos to help us deal with everything, but we also help each other acknowledge and accept our situations. Earlier this year we were having a late night conversation about the realities of being young and living with chronic illness when Leah said, “Hey, we should turn this into a free verse poem,” and I said, “Okay!”

Then this happened.

And then we decided to take it one step further. A few weeks ago I suggested that we re-share this piece for Invisible Illness Awareness Week, which, by the way, is happening right now. She said, “Yeah! Why don’t we make a video and see if we can get some other illness bloggers involved?” and once again I said, “Okay!”

Then, after a lot of emails and a lot of cooperation from a lot of awesome people, this happened.

When we first published this piece all those months ago, it was really intimidating! We usually try to keep things light. We tend to downplay how hard it can be. We like to end things on a positive note. But these words? These words are blunt. These words are stripped down. These words are real.

Keeping things light, finding the positive, and focusing on gratitude? That’s still real, too. It’s not all one or the other, and part of how we cope with our chronic conditions is acknowledging both sides. Since we can’t expect anyone else to understand that scarier side unless we talk about, that’s what we decided to do. We decided to share the faces and voices behind our words. And we decided to invite some of our friends and/or favourite chronic illness bloggers to help us.

A huge thank you to everyone who helped us out with this project! We know it was out of a lot of your comfort zones (it was out of our comfort zones, too!) but we so appreciate you taking the risk anyway.

And a huge thank you to all of you who took a few minutes to watch this video! You are giving us a voice and that is one of the most meaningful things you can do. That is one of the most important ways you can help us. We didn’t create this video for pity; we simply just want to be heard. So thank you for listening.

Before I go, meet the awesome ladies (in order of appearance) who put themselves out there and helped us make this happen!

Catherine…pretty sure you know where to find me!

Leah Holstein

Katie Brook

Amanda Bryant

Sarah Frison

Sarah Rush

Samantha Brink

Stephanie Torres

Lisa Tschetter

Chanel White

Michaela Shelley


Socks and sandals…oh, and empathy, too

Let’s talk about shoes. Other people’s shoes. And empathy.

Actually, let’s start with a story.

Last Wednesday was Canada Day. A friend of mine who lives near a park that puts on a fireworks show every year invited me to come over, crochet, watch the fireworks from her balcony, and then crochet some more (wild, I know).

“Sure!” I said, “I’ll bring the alcohol (swabs)!”

I didn’t actually say that, but I did say I would try and come. For whatever reason, be it medications or temperature or just randomness, I’ve been having really brutal headaches the last few weeks and Canada Day was no exception. For the majority of the day my head hurt too much to move yet I was also too nauseous to sit still. Quite the dilemma. Thankfully, though, by 8 o’clock my meds were working and my TPN was going so I rallied and headed out. And because I have a central line, I really did bring alcohol swabs!

I soon found myself at a roadblock. Literally. Some of the streets were blocked off to keep people from parking where they weren’t supposed to but I had been warned about this. Residents were of course allowed through, and since in past years visitors had been allowed through, too, I rolled down my window, told the police officer that I was going to a friend’s house and gave him the name of her street.

“Sorry,” he said, “we can’t let anyone through without identification and proof of address.”

Bummer, but considering how much effort it takes for me to leave the house I wasn’t ready to give up just yet.

“I understand,” I said, “but I’m not looking for free parking. My friend Lisa really does live at [insert address]. I’m hooked up to an IV here (pointing to central line) and I’m honestly just going to sit on her couch and crochet (pointing to giant ball of yarn).”

But alas, no luck. “Sorry. You can’t get through.”

I sighed and then turned around and headed home, my alcohol swabs unopened and my yarn un-crocheted.

The end.

At first I was disappointed because I was looking forward to a nice evening with my friend. Then I was annoyed for a few minutes. And then my thought process went something like this…I wonder if he would have let me through if I said I was going to knit instead of crochet…maybe I would have had more luck if I had started crying…note to self: learn to cry on demand…perhaps I just look really suspicious and up to no good…that’s probably it, I probably just look really hard core.

And just in case you’re curious, ladies and gentleman, this is apparently what the suspicious-up-to-no-good version of me looks like:

Suspicious-up-to-no-good-me

Now if that’s not hard core I don’t know what is.

In all seriousness, though, I couldn’t really be annoyed because the police officer was just doing his job. And even if he had bent the rules before, I decided to put myself in his shoes and think about why he maybe wouldn’t bend them for me. I was able to imagine up at least a dozen reasons to explain the bee in his bonnet. For one, even though he wasn’t wearing a bonnet maybe he really had just been stung by a bee. Maybe he was recently broken up with by someone who crochets. Maybe he was hangry or dehydrated. Hey, maybe he even has undiagnosed POTS and was feeling really sick standing outside in the heat. Or, perhaps he was just bummed out that he had to work on Canada Day.

Who knows, but by the time I got home I wasn’t annoyed anymore and I actually found myself feeling a little sorry for the police officer! Sure, I wasn’t able to end up hanging out with my friend, but he was potentially a recently dumped guy with a chronic illness who was desperate for food and water and had just been stung by a bee. Sounds like a pretty bad day to me. And even if none of that was true, at least I was no longer annoyed!

If anything, I was grateful to be in a good enough mood that the situation didn’t really phase me. Without a doubt, my reactions vary depending on what else is going on in my life. Had I been over-tired that day, I might have unintentionally burst into tears or let him ruin my night. If my own responses can vary so much day to day then of course the responses of other people can, too.

This Canada-Day-Almost-Adventure is a somewhat silly example, but I really do believe in giving other people the benefit of the doubt. It helps me to let go and move on. It keeps me from wasting energy being upset and turning small conflicts into all-consuming grudges. And it lets me save my energy for battles actually worth fighting. A little bit of time in someone else’s shoes often saves me a lot of time stomping around in my own.

So why not try putting ourselves in each other’s shoes now and again? In a perfect world we would always treat everyone with kindness and respect and never let our emotions or personal problems negatively impact the way we interact with each other. But this isn’t a perfect world. Plus we’re humans, not robots. We have unique experiences, fears, dreams, insecurities, and burdens, all of which shape the soles of our shoes. The only way to understand what someone else’s footprint feels like is to have some empathy and spend a little time wearing their shoes.

I’m going to leave you with a little style tip: you can even justify socks and sandals in the name of empathy. It turns out that making an effort to better understand each other trumps any major fashion faux pas.

Socks and sandals for the sake of empathy

Check out those toe socks…I don’t know about you, but empathy is looking pretty fun to me!

Tis better to have laughed to the point of nausea

If you’ve read my most recent posts I don’t think you will be surprised to hear me say that life has been pretty tough lately. The endless state of wait and see mixed with a loss of independence is really getting to me. And I know it’s vague, but I just haven’t been feeling well. Then there was also the whole acupuncture debacle that resulted in a flare up of all of my symptoms for several days. I also received the disappointing news last week that the specialist I’ve been waiting to see has retired and now no one knows where to send me (a post for another day).

So it’s been tough.

And then yesterday happened.

Yesterday, on a rare day off from working two jobs, my best friend came over. We’ve been friends for approximately 92% of our lives and we were so young when we met that I don’t have any memories of life before I met her. This is the girl who shows up the morning of my birthday just as a fun surprise to say hi, even though she’s coming back later that day for dinner. This is the girl who brings me scratch and win tickets and scented hand sanitizer when she visits me in the hospital just because it’s fun. This is the girl who fulfilled one of my life long dreams (a dream I didn’t even know I had until it happened) and bought me Ellen underwear for Christmas. And it doesn’t matter that I got sick and my life derailed a bit, and she went on to live the normal university, early 20’s, working life, she is a true blue friend.

She came over yesterday and we laughed. We laughed a lot. We laughed so much that it made me nauseous but I didn’t want to stop so I popped a zofran and kept on laughing. Honestly, I don’t even know what we were laughing about. We watched silly YouTube videos and took silly pictures and recalled silly memories. I laughed until I was lightheaded and out of breath.

After she left I was exhausted. And really nauseous. Plus I felt like I might faint so I spent some time lying on the floor. Last night I felt as if I had run a marathon while my legs literally shook with exhaustion as I walked up the stairs. 24 hours later and I’m still tired. I was going to shower today but every time I stand up my body reminds me that it has no extra energy for such activities.

But I don’t even care because yesterday I laughed more than I’ve laughed in a long time and it was wonderful. Sorry to use a cliche (let’s be honest I’m not sorry – I love a good cliche!) but laughter is the best medicine (exceptions to this rule include, but are not limited to, recovering from abdominal surgery and having a feeding tube balloon lodged in your abdominal wall).

I think every chronic illness patient, and actually every person, has at one time or another weighed the option of doing something they knew they would pay for later, or just passing and saving their energy. I do it all the time. Sometimes it’s not even a choice I have to make because I just don’t feel well enough to begin with. Other times the payout, or what I often refer to as the aftermath, ends up not being worth it, and the memory of this payout makes me more likely to pass in the future.

Well, I feel terrible today, but you know what? It was worth it. And I’m so happy to be reminded that sometimes the fun is worth the payout. Sometimes the mental health benefits are worth the physical consequences. Sometimes two hours with your best friend is worth two days of recovery.

Tis better to have laughed to the point of nausea than never to have laughed at all.

And just in case I forget those words, I luckily have an embarrassingly large number of embarrassing pictures to remind me! Key word being embarrassing (read: ugly) so you can look at this much cuter picture instead.

We were much cuter then!