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.

Official Enviroklenz Affiliate! MCS-approved Cleaning Products

Hey guys! I’ve talked before about how much I love Enviroklenz, and I’m still using their laundry products and air filters every day. You can read my thoughts in-depth by clicking here.

If you’re interested in getting some of these environmental protection products for yourself, and supporting this blog at the same time, I now have a handy button at the bottom of every page on this site! When you order using that button, I get a little commission and every little bit helps me keep this blog up for you guys. Plus you get some great, safe cleaning products for yourself. Using stuff like this helps lighten the day to day chemical load you put on your body, which lowers your chances of MCS and other chemical reactions and helps keep you healthy.

I’m also going to put a couple of big banners in this post since we’re here and they’re cool.

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Ya need to clean anyway right? Plus, you know that I wouldn’t put a permanent button on this website for any product I didn’t believe in and use myself. I’m not going to sell out on you guys – this button is really here for you. I hate shopping for cleaning stuff. I read the labels to try and be informed and usually can’t find a single thing with little to no harmful chemicals and fragrances. I don’t have MCS or eczema (if you do then you probably already use things like these) but I’ve always been sensitive to fragrances products, especially laundry stuff. So yes, I really am using this and it really has helped me.

I promise to stop talking your ear off about it now! Just know that handy button will always be down there just for you the next time you need cleaners or air purifier stuff.

Love you all! And OF COURSE don’t forget to make a rage comic and enter the #spoonieragecomiccontest! It’s free and there’s prizes! Go go go!

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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Guest Post: 5 Things You Didn’t Know About Breastpumping

Hey everyone! Today I want to welcome Natalie from MaternityAtHome.com! She’s got some great info here on breast pumping, which is great general health info but especially important for chronically ill mothers who may need to pump in order to stay on a medication schedule or accommodate a sick day or hospital stay. Check it out, and be sure to visit her blog and show her some love!

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5 Things You Didn’t Know About Breastpumping

Motherhood is a perplexing but otherwise extraordinary experience for most women. There are so many things you need to do, and attaining the knowledge for each and every thing is just something that will elude you.

One scenario that almost always plays out after giving birth is the choice between breastfeeding or breastpumping. They both have their pros and cons, but there are some hidden gems within pumping that most new mother’s don’t know about and that might just push you towards making that decision much easier.

With that said, let’s take a look at 5 things that you likely don’t know about breast pumping and how they affect your daily life as a new mother.

  1. You have more time to rest: Breast pumping is not just for the on-the-go mother who is limited by a career. Stay-at-home mothers can also reap the benefits of breast pumping too. New mothers need their me-time, and a breast pump can be the perfect solution for racking in those extra minutes of sleep, or chores around the home.

    By using a breast pump that is actually good, stay-at-home mothers can rely on their stock of breast milk to ensure a well-fed newborn. Having a supply of breast milk is also especially important for premature babies or multiples, who may require extra attention in the home.

  2. Others can connect with your baby too: Using a breast pump can give your loved ones a chance to connect with your baby as well. Breast pumping can give you the rest you need, but can also be a way for your significant other, or other family members to develop a healthy relationship with your little one.

    You will appreciate the small acts of kindness others show by helping you with feeding! Imagine the happiness your baby will be bringing to yourself, and those around you. Your bundle of joy can bring happiness to everyone.

  3. You can monitor a baby’s eating habits: This is another major benefit of breast pumping that you may not have known. Every baby is different, including your soon-to-be newborn. It’s important to keep track of how often and how much your baby is eating and growing on a daily basis. The amount of milk each mother can store varies from woman to woman. By using a breast pump, you can actually monitor the intake of your baby’s feeding frenzies to their smaller snack times.

    Breast pumping and feeding your baby this way will give you the most insight on how your little one is doing. Don’t become frustrated if eating patterns you have found begin to change, this could be a good sign your baby is growing and on track to start solid foods.

  4. An emergency supply can be a savior: In rare instances, after surgery, while taking medications, or during illness, you may not be able to breastfeed. You should find out all of the information you can from your doctor, to continue to breastfeed when you or your baby is sick. Having expressed milk saved in the freezer for unforeseen circumstances will help you and your baby immensely.

    While this may not be a common occurrence, having a mother’s breastmilk on hand can be more nutritionally beneficial than relying on formula in times of need. Breast milk can be stored in the freezer for up to 2 weeks.

  5. Breast milk is healthier than formula: Breast milk vs. Formula…many new mothers struggle with the idea of giving their baby breast milk versus formula. While formula is a quick fix for those who may be unable to produce enough breast milk, using a breast pump can build up a supply of vitamins, nutrients, and antibodies your baby needs from your breast milk!

    There’s a long list of benefits your baby can receive from your own breast milk, and as a mother you have a unique formula perfect for your growing baby. Nothing can compare to the beautiful benefits of a mother’s own breast milk, and a breast pump can be the perfect solution for having all your baby needs right at your fingertips right when your baby needs it.

There you have it. These 5 things really make breast pumping an appealing option for new mothers over breastfeeding and formula. When it comes to your baby’s health, it is better to stay natural and give them that has worked for thousands of years, so breast pumping is the ideal in between option that takes advantage of both breastfeeding and using formula.