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.

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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Taking A Sick Day

It’s not quite fall yet and here in Texas temperatures are still in the 90-100 degree range, but that doesn’t mean it’s too early to talk about cold and flu season! Know how I know that?

BECAUSE I FREAKING ALREADY HAVE A COLD/FLU.

So I wanted to blog today but I really need to take a “sick day.” My husband needs one too, but he’s at work anyway because that’s how it is around here. So I thought I’d share this awesome infographic from Masters in Healthcare about the benefits of paid sick leave.

Sick Days Infographic

This is predominantly about sick days for acute illness, like a cold or flu, but a lot of it applies to chronic illness as well. I’m lucky because my illness still allows me to work, and all things considered, I don’t need sick days very often. But they still occur more often than most, and it’s not unusual for me to end up at work on pain medication. I have felt that calling in sick could cost me my job, and that’s not great. Texas is a “fire at will” state, so if I did get fired for being sick (hey, come to think of it, I have!) that’s technically illegal I guess, but since there’s no requirement to give a reason for termination, I can’t prove it or take any kind of action.

But some states have better situations, and with our recent observance of Labor Day, it’s important to remember how far we’ve come. Unions and workers rights have come this far, and they can come even further. đŸ™‚

Have you ever gone to work sick? Well, of course you have. But why? What could improve this situation? Leave your thoughts in the comments and I’ll catch you when I’m feeling a bit better.

Born This Way Vs. Consequence: How Some Illnesses Are “Deserved”

If you follow my blog, you probably know I have endometriosis. Endo is a chronic pain condition that one is born with. Researchers aren’t sure what causes it, and there’s virtually no way to prevent it. There’s no cure, either, so if you’ve got it, you’ve got it and that’s your life.

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Living with this illness sparked my desire to write this blog. Endometriosis was the hand I was dealt, and it seemed extremely unfair that I would face discrimination or humiliation for something I couldn’t control. I wanted the word “endometriosis” to enter the conciousness of the general public, and become part of household vocabulary. So many women suffer from it, but go untreated while being told that they’re “too sensitive” to “period pain,” when the issue is much deeper and more complex than that.

But it’s easy to be a social justice warrior for a cause like that, isn’t it? Chronic conditions like endometriosis are basically genetic roulette – from birth, your fate is randomly decided. No amount of exercise, healthy dieting, or good decision-making is going to make you well. In short – it’s not fair.

But what about illnesses that are a consequence of a choice?

It’s a lot harder to advocate for those.

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One thing I mention sometimes, but not often, is that I also have IBS – irritable bowel syndrome. No, I don’t avoid talking about it because it’s poop-related. No, I don’t shy away because the name is condescending and misleading (irritable? Really?). I almost never talk about it because I gave it to myself. It’s my own fault that I have IBS.

How?

Well, I guess I can’t definitively say I know for sure that IBS was a consequence of my actions. But I feel 99% certain it is. When I was in college, I got a very bad tooth infection. As in my face swelled up, my throat swelled shut, and I could have died. In the throes of all that, I was taking a lot of antibiotics – strong ones, the strongest there is. And I took all types. For those of you who don’t know, antibiotics are great at stopping infection but not so great for your stomach. Probiotics (the opposite of antibiotics) cause healthy bacteria to grow in your gut, antibiotics kill them. Beyond healthy digestion, the goings on of your bowels contributes to every aspect of your health- even down to creating hormones that keep your mood stable. In other words, an out of balance digestive system can make a person depressed, anxious, or even bipolar (with other contributing factors of course).

So I basically massacred all my good bacteria. And it kept my throat from closing and my tooth from murdering me. But it also made me severely underweight, and caused a lasting anxiety issue. And I was also diagnosed with IBS – a disease that flares and subsides but never really goes away.

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Was it wrong to take antibiotics? Of course not. Do I feel guilty about it? No. At the time, if my doctor had said “alright, there’s a chance this medicine will cause you to loose your appetite, loose weight too fast, and give you lifelong anxiety,” would I have taken the medicine anyway? Yes. It sounds dumb to say a tooth infection was a medical emergency, but it seriously was. Nothing would have changed my choice to take that medicine.

So I don’t talk about IBS so much. I don’t feel ashamed but I do feel… I don’t know, like I picked it? So complaining about it seems… unearned?

It’s similar to the way I feel about my PCOS – but my feelings towards that illness are even more complex. I wonder if I caused it, from being on birth control for so long. But it also mostly affects “voluntary” aspects of my life – mainly having children. The emotional anguish and financial burden of having PCOS was huge and affected every facet of my being – but again, complaining about it felt undeserved, and more like a first world problem than a real one.

And I’m aware of how detrimental this line of thinking is. I mean, it obviously isn’t healthy for me to blame myself for illness. I ought to love myself a bit better than that. But what’s worse is society at large’s tendency to think this way. Look at lung cancer – unlike breast cancer or lymphoma, lung cancer is rarely viewed as tragic or treated to fund-raising marathons. Rather, lung cancer is a punishment for smoking, right?

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What about AIDS? What comes to mind when you think of AIDS? It’s definitely sad… and definitely still associated with sex, drugs, and homosexuality.

What about suicide? Again, tragic. Tragic and so very preventable, right? A choice, rather than a death at the end of a long battle with mental illness. Not at all like death at the end of a long battle with any cancer that’s not lung cancer.

I don’t mean this as a guilt trip, either. These statements reflect my own mixed reactions to these stigmatized diseases.

What can be done to combat this unhealthy line of thought? What changes have you made in your own mind about these things? If you have an illness, do you blame yourself for it? Have you in the past? What changed that?

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I want to hear what your thoughts are. Tell me about it in the comments and let’s work through these stigmas. Changing one mind at a time is the first step to a healthy view of illness.

Pregnancy Update: 37 Weeks/ The Doctor’s Final Say

This is Part 2 of our Doctor Debacle. You can read part 1 here.

So when last we spoke, I told you our doctor requested a second meeting to talk about our birth plan. You know, after he actually took a look at the thing. I was not optimistic, but it went even worse than I thought it would.

Here’s an assortment of gems from our discussion:

“Natural birth includes dead mother, dead baby.”

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“‘Informed consent’ is a legal term – that’s a very combative term to use.”

In response to us saying “We welcome your advice.” – “What I’m giving is not advice. I’m telling you what I’m going to do.”

“No one uses the shower while in labor.” – Then why does every labor room have one…?

“It makes no sense not to use continuous fetal monitoring. You wouldn’t put your newborn in the other room with no monitors right? So how can you want me to not monitor it?” – 1. We never said no monitoring. We said we’d like intermittent monitoring, which in most hospitals means 15 min every hour. That’s a lot of monitoring and we’ve done our research on it. 2. Ok, by your logic no one’s monitoring the baby at all for the full nine months, how is that ok? Is it because I’M monitoring them? We trust my monitoring skills for nine months but not one day of labor?

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“Go to a birth center for your second baby, but if you go there with your first they’ll die or worse, they’ll end up in a wheelchair all their life!” – so far my research on if the first baby is somehow riskier than subsequent babies has turned up literally nothing.

“IUI babies are high risk. We have to induce on your due date.” – this one almost makes sense. Research does show a slight increase in risks associated with IUI babies – but that’s because IUI increases the odds of twins or more (which I don’t have) and IUI babies are usually born to older mothers (and I’m 25). So…no. Not so much.

“Walking does not induce labor. Sex does not induce labor. Don’t you think if these things worked, we’d tell all moms to do them? Pitocin is the only thing that works.”

“I’m going to break your water. Don’t tie my hands here.”

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“Letting the epidural wear off before pushing was what we did in the 80’s, there’s no reason to do it anymore.” – except when I’ve said that I’d only get an epidural to rest in the event of a long labor, and when it’s time to push I want to be able to feel and move again so I can use different positions.

“You say you want to avoid a c-section – of course. We always try to avoid a c-section. It’s condescending to even say that.”

“You can’t ask me to not do an episiotomy.” Actually that is completely within my legal rights and most doctors don’t even do them anymore. Could he explain to me why he still did routine episiotomies? See next quote…

“Just trust me.”

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“Almost every mom has hemorrhaging after labor, so we give routine pitocin to everyone after the baby’s born.” – I’m kind of concerned that all your patients hemorrhage. That does not seem to be the norm elsewhere.

“As far as not giving you a catheter after delivery…” – he then proceeds to show me graphic photos of catheters in hugely swollen vaginas – to the point where I’m not even sure what I’m looking at. Now, I’m glad to look at pictures and learn more about what’s going to be happening. But upon doing my own image searches of post-delivery swelling, the photos I found looked nothing like that. Clearly what he was showing me was some kind of complication – but he didn’t say that. He was using these photos as scare tactics with no information on what I was looking at or under what circumstances this could happen. I agree – if my vagina looked like the photo he showed me, I’d need a catheter. But I have no idea what would cause that, how common it is, or what the treatment options for it are. It would still be uninformed consent – sorry, I know I’m not supposed to mention legal terms or my legal rights. I’m so bad at ignoring those.

So my doctor was suddenly being the evil, fear-mongering doctor that natural birth documentaries paint pictures of and I never believed really existed. Normally, I could just be kind of pissed off and move on. But this was sad because I like this guy. He’s been my doctor for almost 10 years. Through my surgeries he’s had a great bedside manner, and I’ve trusted him with my life basically. He’s always taken good care of my endometriosis. But this time I’m not sick, and rather than being a passive object while being repaired, I want to be involved in this exciting physical event. That is simply not how he’s looking at it.

An active patient that wants options is seen as a threat.

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It’s just really hard to do the right thing and walk away from a friend. In the end, I have to put me and baby first. Will having a medicalized birth somehow ruin my child? No. But it would be sad to miss an opportunity to have birth be a good memory, to grow closer to my husband and child, and to experience a healthy body doing normal things for once. It’s climbing a mountain because it’s there.

And really, no matter what’s going on, you have choices. A doctor can’t tell you that you don’t have choices. Now I wish I had done more research and been more active about endometriosis and PCOS – who knows what choices I had? I hate to look back on those costly, painful surgeries and think that maybe my doctor kept other options from me. I wish I just hated him. It would be much easier to self advocate for my inalienable right to know my options for care if I was up against an out-and-out villain.

But I’ve spent almost 10 years believing he was a really good doctor.

At 37 weeks, I’ve gone through the arduous process of transferring care to a birth center and midwife. I’ll write a whole post about that process later. But it’s just really lucky that I didn’t go into labor during all that mess. I’ve felt guilty and sad every step of the way – and my doctor definitely helped those feelings along with more gems like “You really should have brought this up at like, 20 weeks.” Well, at like 10 weeks I told you I wanted a natural birth and you said “Ok. Most moms say that now. We’ll talk more later because most first time moms change their mind at some point. No second time moms come in here asking for a natural birth. You’ll change your mind.”

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Shoulda been a red flag I guess. But at the time, I was 10 weeks pregnant and still just beginning to learn my options. I also would have never thought my doctor would flat out refuse my wishes as long as they were reasonable. From the sound of the comments I’ve received, you all seem to agree that nothing I’ve asked for was insane.

But my legal rights and reasonableness don’t make me feel any better about the situation. I know I did the right thing, but it was hard and felt terrible and has left me with no one to care for me if endo comes back post-partum. I have no primary care doctor– really, I have no doctor period. Now what?

Focus on the baby. Only 19 days left now. After that, I’ll figure out my medical future.