Sometimes People Suck

I love participating in WEGO Health’s twitter chats (follow @wegohealth on twitter to check it out). And each time, no matter what the topic that week is, the subject of losing friends seems to always come up. Chronic illness, whether physical or mental, tends to encroach on our social lives and that can bring out the worst in people. We don’t want to cancel plans or spend all of our time talking about our illness, but when we do, it would be nice to be met with understanding. Unfortunately, it can often break a friendship or even a romantic relationship.

Sometimes one too many cancellations causes a friend to give up on hanging out with you. Sometimes one too many suggestions to “think positively” or “try yoga” or “maybe if you just…” causes you to hit the unfriend button. Sometimes, after an awkward encounter with your illness, a friend or loved one “ghosts” you, falling off the face of the earth. Maybe they can’t deal with facing the idea of mortality when they see an incurable illness. Maybe their desire to “fix” you has made you feel unloved or unvalued, because as much as our illnesses don’t define us, they’re still a part of us. Maybe it was simply more baggage than they signed up for when they decided to be your friend/significant other.

It’s harsh. But it’s also true. Sometimes, people just suck.

A while back, I wrote a post on the story of Job, specifically looking at misguided attempts at “comforting” friends in hard times. Job is a bible story I think many people with chronic illness can relate to, and there’s verses that apply to losing friends as well.

Check out these excerpts from Job 19:

“He has alienated my family from me;

my acquaintances are completely estranged from me.

My relatives have gone away;

my closest friends have forgotten me…”

“My breath is offensive to my wife;

I am loathsome to my own family…”

“All my intimate friends detest me;

those I love have turned against me.”

When we go through something really tough, like an illness, sometimes it feels like everyone abandons you right at the moment you need them the most. Loved ones may be visibly drained by your experience, making you feel like a burden. When you stay home ill, it’s easy to feel forgotten. Illness is alienating. Healthy friends don’t know how you feel, and maybe you don’t know how they feel, either.

A more modern quotation that captures this can be found in the song “People Just Ain’t No Good” by Nick Cave.

“It ain’t that in their hearts they’re bad.
They can comfort you, some even try.
They nurse you when you’re ill of health.
They bury you when you go and die.

It ain’t that in their hearts they’re bad.
They’d stick by you if they could.
Aw but that’s just bull, baby.
People just ain’t no good.”

***

I know that it’s not everyone. I often say that, especially when it comes to dating, illness can be a good thing because it weeds out the insincere. At the end of the day, you’re left with people of heartier stock. True friends, true love. But when you care about the ones you lose, you don’t want to hear that.
Sometimes, people just suck.
Listen to some moody music, wallow in it, get mad, get sad, but then remember the true ones. Find them, because they’re out there.
But if you’re reading an article called People Suck, you’re not here for that, so yeah, people do suck. Most people.
But you don’t suck.

The Health Disrupter Journal from The Allergista!

The Allergista is one of my favorite bloggers, and I’ve talked about her many times on here. She was kind enough to reach out to me to give me a chance to try out her health disrupter journal and share it with you guys!

Now, I have a confession to make: she asked me to do this a looooong time ago. Like, months ago. And I have not adjusted well to keeping up with blogging and parenting a 1 year old. Add journaling on top of that and I majorly failed. But I wanted to complete the journal before writing this post, so… here we are, months too late but honest!

So this isn’t my first health-journaling rodeo. I’ve kept a diary of what I eat and my digestive reactions before, and I’ve also tried out a few apps to track symptoms along with diet, sleep, and other things. I have a love-hate relationship with journaling this way. It’s great because it’s shown me patterns in my health, and helped me to discern what foods/habits cause my pain to flare up, or cause my IBS to get bad. But it’s really hard, at least for me. The first few days go well. I’m excited and write down everything in detail. But after that… life happens. I try to jot down some notes at the end of the day, usually while half-asleep, and soon I miss entire days.

And of course, when I do get sick, journaling is hardest of all, and also most crucial. So this is a huge challenge for me. The great thing about journaling is that even small bursts can be helpful in solving health mysteries. So with the Allergista’s health disruptor journal, that’s exactly what I did. I journaled for a week or two at a time, then took a hiatus. Not by design, but because that’s kinda just how it happened. But I still solved some of my own health mysteries.

The journal has four basic parts: a daily log, a weekly notes section, a weekly summary of symptoms, and a monthly calendar. To be honest, I didn’t use the monthly calendar much, but only because I have another one that I keep all my appointments and life notes on. I know in this day and age, most people don’t have a monthly paper calendar posted up anymore, so this would probably be more useful to someone who didn’t have another system in place.

The daily log is set up for allergies, but is easily adapted to chronicle chronic pain or gastrointestinal problems. The only section I didn’t use much was logging skin problems, since that’s pretty exclusive to tracking allergies. But I liked the tally system of giving each symptom a number and totaling it. The higher the number, the “worse” a day is symptom-wise. This is great because when you’re in a flare, you can feel like “oh I’ve felt horrible all week” but looking at the numbers you can see that there are days where even though you have symptoms, you’re feeling a little better. That can be really encouraging, especially in a long flare.

I like the body location symptom tracker. I’m a very visual person, and I like to doodle, so it was fun and also informative. I could see pain “make its rounds” so to speak. I like that a lot.

Finally, the notes section. At first, this was the biggest chore, mostly because I was unsure what to put there. But I ended up using it as my place to pose questions and come up with hypothesis. I could look back at previous weeks and see if I’d proven my ideas or answered any questions.

The biggest health mystery this journal helped me solve actually had to do with anxiety. When I have a panic attack, it almost exclusively happens at night. My anxiety keeps me awake, and eventually builds until I’m sweating, pacing, and generally loosing my mind. I found out through journaling that there are two things that I thought were helping me that were actually contributing to my panic attacks.

One was drinking. I had gotten into a bad habit of always having a glass of wine at dinner or bedtime most nights, thinking it helped me relax. It kind of did, but on nights when I didn’t drink I was much more likely to sleep well. Stopping this habit didn’t completely eliminate my anxiety attacks, but it helped a LOT.

Second was reading. Yeah, the thing EVERYONE tells you to do when you can’t sleep! I adore reading, and I read paper books with no irritating backlights to disrupt my sleep cycle. But I think I must love it a little too much. I noticed I tended to have trouble sleeping after reading, and noticed that I get a little too into books to relax. I stay awake thinking about the book (especially suspenseful ones) and end up in the anxiety zone. Now, I’m careful to only read either books I’ve read before or calm, non-suspense/mystery/adventure books before bed if I read at all.

So what’s my final verdict? Health journals are great, and the Allergista’s is one of the best I’ve tried! If you’re like me and can only journal in spurts, remember that it’s better than nothing and you can still benefit from what you learn from it. I highly recommend this one for it’s organization, it’s tracking tools like tallying and body diagramming, and it’s coverage of all areas you need to track in an easy format. You can download it by clicking

HERE!

I hope you all check it out and give journaling a try if you haven’t already. You’ll be surprised what you can learn! Plus, if you have an attentive doctor, they may like to look over it and help you find patterns and give you advice.

Also, don’t forget to enter the #SPOONIERAGECOMICCONTEST! There are free prizes to win and I’ll let you in on a secret: there’s not much competition right now. So enter today! Google “rage comic maker,” choose your favorite, then create a comic that has something to do with health, chronic illness, allergies, doctors, medicine, or anything in between! Then upload it to twitter or instagram with the hashtag #spoonieragecomiccontest.

Can’t wait to see what you come up with!

Invisible Illness Rage Comic Contest!!!

You don’t see rage comics around as much these days, and that makes me sad. I love a good rage comic.

What’s a rage comic, you ask?

It’s a comic strip made from a series of pre-drawn expressions of various emotions– oh nevermind. I’ll just show you!

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So yes. These little characters can be strung together with doodles to convey little weird slices of life. So I thought WE NEED INVISIBLE ILLNESS RAGE COMICS.

SO LET’S HAVE A CONTEST!!!

You can make your very own rage comics by clicking here!

There’s only one rule: your comic must be about living with invisible/chronic illness.

You can submit as many times as you like!

Just make your comic, save it, and post it on instagram or twitter using the hashtag #SpoonieRageComicContest by March 20th! You have ONE MONTH! Use it well!

What will you win? Your pick of any item from the Official DoILookSick Store!

So hop to it!

Here’s my chronic illness rage comic for inspiration:

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I can’t wait to see what you guys come up with!

Doing What You Can Even When It Seems Too Small

There’s all kinds of things wrong with the world, and everyone has some issue that they get fired up about. Recently, the Women’s March made waves around the world.

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And lots of women were out there marching for lots of different issues. Pro-choice, Pro-life, women demanding equal pay, women demanding a safer world, women standing with Standing Rock, women who won’t tolerate being talked about they way certain Presidents talk… almost any issue you can think of.

BEN GARVER — THE BERKSHIRE EAGLE  A sign carried in the Washington DC Women's March was delivered by Paul Johansen to the Shire  City Sanctuary for Febuary exhibit of art from the women's marches.

This was a march for like…everything. It seemed like every issue that people get fired up about was represented, even both sides of arguments showed up. Pro-lifers were marching right along with pro-choicers. Yet there were still some who just couldn’t find an issue to cheer for, so they protested protesting!

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But all of these people all over the world with all these views have something in common. They all went through a series of universally human steps:

  1. They felt a fire in their belly about something.
  2. They made up their mind to take action towards real change.
  3. They took whatever action they could think of.

Take me, for instance. I was diagnosed with endometriosis as a high school senior, but it wasn’t until my senior year of college that I started feeling the fire in my belly for health activism. At the time, I didn’t know a word for it, but it was health activism. I saw the discrimination of myself and others who don’t “look” sick, and were written off as liars, party girls, drug addicts, or attention-seekers.

Once the fire in my belly got hot enough, I reached step two: I NEED TO DO SOMETHING.

I cannot accept the way things are. I know that people can learn. I want to teach them. I want them to learn the science of these illnesses and health in general! Health education is so, so lacking in America. I can tell you exactly how a plant uses water and sunlight to create energy and grow and what makes a plant healthy or unhealthy, but I graduated without even knowing what all my lady parts are even for and how diet can drastically affect how your body functions. As Trump would say, “SAD!”

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But here’s the kicker. Everyone everywhere has gone through steps one and two, but so many people give up before step three. Why? It’s not because the fire has gone out. It’s because any action we can think to take often seems too small. I’m just one person. I’m not a politician, I can’t control laws. I’m not an educator, I can’t change what people learn in school. I’m not a doctor, I can’t cure people. I’m just one sick person. There’s nothing I can do.

Either that, or we reject the ideas we do have. I could start a fundraiser, but it would annoy my friends and family. I could protest, but what if I’m alone? I could donate money, but where does it go and what does it do? I could write things on the internet, but literally everyone does that and it would be a drop in the ocean.

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I decided to go for it. What could I think to do? Well, I was a creative writing major. I could write something – what? A blog. Because it’s free and (in theory) the whole world could read it. Could. Probably wouldn’t, but it was possible. And what about my school? The discrimination that put a fire in my belly all happened at my university. I needed those students, specifically, to read what I had to say.

How? I decided to make posters. Just black and white, 8 1/2 by 11, self-printed posters.

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Aww look at my old url. Anyway, I posted these all over campus, occasionally getting scolded, and feeling quite sure no one would ever read them or my blog but whatever. Like I said, I had to do something.

I got an email from an anonymous person thanking me for bringing this issue forward, but it was one out of the dozen or so emails I got telling me to please stop so it seemed like not a lot. But then a really crazy thing happened – a girl stopped me on campus and said “I recognize you… you’re on those posters!”

We ended up having a seat on a bench and talking for upwards of thirty minutes. She had a bone marrow disease (I wish I could remember exactly what) and had struggled so much with faculty and other students not believing how sick she was. She was vibrant and full of life and of course, didn’t look sick. She told me that seeing the posters made her feel less alone. And she thanked me.

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So this one little thing that I was sure would make no difference… made a difference. This dumb thing that was the only thing I could think to do actually did something. What I thought would be too small to notice was noticed.

I did what I could and it made a small difference.

I did what I could and it was worth doing.

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Nowadays, I’m still pretty sure everything I do for this fire in my belly is too small. Womens’ healthcare costs remain high (LORDT that is always on my mind) and we have some lawmakers now making things harder. People still post hateful notes on cars parked in the handicapped spot if they’re driven by a healthy-looking individual. This blog has won some awards, but I get about 50 views a day, post super irregularly, and still get a lot of hits from people looking for info on David Bowie.

Most days, this feels too small to be worth doing.

But occasionally I get someone thanking me and telling me how much it’s meant. And I have to think that for every person who says something, there must be more people who don’t speak up, but who glean something from this. And hey, I even had the head of the UNT disability office call me to chat and make sure they were doing all they could for their students.

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So just know that even if it seems too small, do it. Do it for the fire in your belly, do it for yourself, and do it for the world. Think of how much better a place the world would be if everyone did what they could!

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SPOONIE OR SENIOR CITIZEN?

Let’s play an exciting new game called:

SPOONIE. OR. SENIOR CITIZEN.

First up: the kitchen pantry!

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Whoa nelly, that’s a lot of vitamins! So? Spoonie? Or Senior Citizen?

Next: the bathroom cabinet!

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Miralax! So much miralax! What do you think? Spoonie? Or Senior Citizen?

Third: the shower!

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Interesting, a stool! That seems to suggest Senior, but it could still be a Spoonie. What do you think?

Next: do they own a SMTWTFS pill box?

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Oh man, this one is still up in the air folks!

Finally: the jewlery box.

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Oh man, this is a real doozy. A medical alert bracelet is very senior citizen BUT it’s kind of trendy and cute– a spoonie, perhaps?

Spoonie or Senior Citizen? The world may never know.

There are no winners in this game. Only losers.