Category Archives: Marriage

Birthday, Anniversary, and U2- Oh my!

Who am I? Where am I? Does anyone know what day of the week it is?

Seriously, y’all, we’ve had way too many holidays in the Early household. First, there was Joe’s birthday. He doesn’t ask for much- just a small party with his parents, a day in Louisville for the two of us, and a small party with close friends. Dude wanted 3 celebrations. Now, I can’t judge. I declare the entire month of September as the “Festival of a Tiffany,” so I can’t really begrudge his three celebrations. But . . . by the final celebration, I was sticking potato chips in the dishwasher. Because, when I’m tired that seems like a totally logical place to store chips.

Now, if you’d told me six years ago when Joe and I chose a wedding date that my body would eventually require a couple weeks to recuperate from Joe’s birthday, then I wouldn’t have had the wedding eight days after. But, it’s not legally possible to change my marriage date, so the next weekend was devoted to our anniversary- which happened to involve a U2 concert.

Yikes. Here’s the thing- I love music but, sort of, hate concerts. But, you guys! It was U2! That’s basically a check on everyone’s bucket list, so I had to go. The problem? I was still in recovery mode from Joe’s birthday palooza. Literally, the day before the U2 concert, I was in the recliner all day with insane chest pain. (Note- I’m not being an idiot and refusing to get a medical emergency checked. My chest pain comes from EDS/ POTS, and I have a decent understanding of its source. Over the last six years, I’ve learned this weird body better than I ever thought possible.) There were several points that day when Joe offered to sell our concert tickets on Facebook. But, it was our anniversary trip. I could have cancelled. Perhaps it would have been wise to cancel.

But, to be entirely honest, I’ve lost enough to illness. My marriage has lost enough to illness. If there is a possible way for Joe and I to do something (within reason, of course), then we’re going to do it. Friends, here’s the truth. I didn’t feel great. The concert was outside. U2 came on a couple hours later than expected. It was hot. Joe and I were both tired (him from pushing my wheelchair in 95 degree weather and me from this new phase of never ending chest pain), but we did it. We saw U2! I’ll be honest; if you watch Bono, and don’t get a little emotional at some point- you’re made of steel. I was already a U2 fan (albeit not a superfan), but I have so much more respect for that group and all they stand for. Fan girl shout out- One Republic opened for U2, and they were the bomb.com!

But . . . you know what? The weekend wasn’t over. After the concert there was still the matter of our anniversary. Fortunately, Joe and I decided to forgo the whole gift giving/ fancy dinner thing and instead spend a couple nights in Louisville. That meant I got two nights of 10+ hours sleep (Why do I always sleep better in a hotel? I refuse to admit that it might be the lack of the four-legged bed hog named Zoey that sleeps between Joe and I.) Obviously, when we made our plan, we didn’t know that I was going to be very much on the struggle bus. But, I was so grateful for those two nights of rest.

Here’s my point. Being chronically ill complicates every aspect of life. My marriage is permanently marked by the stain of illness. Joe asks how I’m feeling/ doing every single day- because my health is unfortunately a constant theme. However, Joe and I have made a commitment to having all the fun we can in our time together. Sometimes, that means taking a chance on a concert when I feel like dirt. Other times that means going honky tonking in Nashville the night before a serious doctor’s appointment at Vanderbilt. Friends, I’m far from a relationship/ general life expert, but I still have advice. Take every chance for fun. Put yourself in situations that might be hard but will also be fabulous. Obviously, make sure you’re with someone who will understand if you have to bail, but take the chance that the entire experience could be wonderful.

While I’m giving advice- here’s a little more. I used Snookie (the wheelchair) in order to enjoy the concert. That wasn’t in the original plan, but she became necessary. Once we realized that I was feeling rough on Thursday, we called the venue to see if disabled seating was available. This required us to drive to Louisville a little early in order to swap our tickets. Switching to accessible seating also meant we were on Club Level, so I could go inside and cool off under air conditioning as needed. Also, by taking Snookie to the concert on Friday, I saved what little energy I had available in order to enjoy Saturday/ Sunday in Louisville.

My memories from the U2 concert? Priceless. I wheelchair danced like an idiot. I sang along loudly and off-key with Joe. (We sort of specialize in both loud and off-key singing.) My weekend memories with my husband are just as special. This life is rarely simple, but I am so glad that Joe and I have made enjoying each other a priority. My challenge for each of you is that you take a risk in order to enjoy time with someone special to you. Maybe that’s going on a vacation to a whole new place (if so, I want to hear all about it!) or maybe that’s staying up late to watch a movie that will make you both laugh until your sides hurt. Do what works for you, but take a chance on something fun with someone who matters (family, friends, significant other).

By the way, we’ve already bought tickets for a Bruno Mars concert in Louisville this September. (Thank goodness, the Yum! Center is indoors.) The fun and insanity continue. Live it up, friends.

Peace, love, and health.

I’m Pretty Sure You Want This Book.

This (link at the bottom) is my book. Okay, technically, it’s Joe’s book too, because he did a lot of work on it. But since I’m the person with the chronic illness and this is a book about chronic illness- well, I’m a little emotionally attached. Just in case you’re thinking you don’t need this book or don’t especially want it, humor me while I make my case.

So, here are the “Crazy, Chronic Reasons Why You (might) Want to Read This Book.”

  1. It’s a beautiful love story. Okay, it’s not exactly a beautiful love story. As a matter of fact, I mention bodily functions that are neither beautiful nor lovely a couple times. However, Joe and I wrote this together. He literally saw my desire to write a book and not only encouraged it- he did a lot of the work. We talked through every chapter together before I wrote it. He physically typed a lot of the book, because my crazy, dislocating hands wouldn’t allow me. We have called ourselves #TeamEarly from the beginning, and this collaboration showcases exactly why. We work together. We laugh together- and, when necessary, we cry together. So, while a book instructing you with how to cope with very public and very projectile vomit isn’t exactly romantic, the love and cooperation that went into each page certainly is.
  2. It’s likely to boost your confidence. Do you want to know why it will boost your confidence? Because as you read through this book and experience our raw honesty, there will be times when you’ll think, “I would never be dumb enough to get myself in that situation.” See? You’ll feel smarter. Okay, seriously, this book talks about embarrassing symptoms that so many of us face- brain fog, incontinence, mobility struggles, etc. Let’s be honest- I’m about as graceful as an elephant changing underpants. I have a long history of blunders to share. I will give you tips to saving face as much as possible when your body decides to be a jerk in the least convenient of places. Personally, I always feel more confident when I have a contingency plan.
  3. People seem to actually like the book. You guys, I have reviews, and they’re not bad. They’re actually, well, great! Even more impressively, to the best of my knowledge I am not related (by blood nor marriage) to anyone who has reviewed my book. You never know when you write something if it will reach your audience in the way you hope. There’s a chance that Joe and I have been drafting and typing our little hearts out on a project that stinks. But . . . it’s beginning to look like it doesn’t. I actually believe we may have accurately portrayed this life in a way that others can relate.
  4. It will make you cool. Okay, there are many words that could describe me, and “cool” will never be one of them. I will never listen to the right music or understand pop culture references. However, illness has made me more sensitive to the needs of my chronically ill/ disabled friends. We have done our best to convey to significant others, caregivers, friends, congregations, and ‘that lady from WalMart’ how to be aware of the needs of others. And, seriously, what’s cooler than compassion? Am I right?
  5. I will appreciate your support forever. Everyone isn’t in a place where they can buy a book. I understand that completely. Please know that every word of encouragement, like, and share mean the world to me. My Crazy, Chronic Life blog audience was the driving force behind this book, and your love and encouragement help me keep my head above water on the hardest days.

Friends, each of you have encouraged Joe and I throughout this process, and we truly appreciate it. (I considered telling everyone that to show our gratitude Joe would be available to sing at the wedding of anyone who buys our book. Strangely, he didn’t consent to that.) So, one more time for the people in the back- my book link is below. Try an excerpt. See if it’s for you- or if it might help someone you know.

Peace, love, and health to each of you.

We’re Going to Disney World- and I have to take EDS with me.

Y’all, I’m going back to Disney World in a few days, and I am beyond excited. Okay, at this exact moment, I’m beyond stressed. I hate packing. I hate preparing to leave. I’ll sum it up like this- Tonight’s dinner came from Dollar Tree, because I was too tired to walk through the grocery store. (I bought frozen vegetables. I feel like I deserve a medal for not deciding tonight’s dinner would be peach rings and circus peanuts.) I’m trying to rest, so I’ll feel decent once we get to Disney. But, seriously, who has time to rest when they’re preparing for a trip?

I’m going to let all of you in on a secret. Last year’s Disney trip wasn’t exactly stellar. Don’t get me wrong; Joe and I had a great time. But I sort of fell apart. My neck developed new pain (I didn’t think that was possible) so severe that I actually lost vision in one eye for a while. That whole situation never fully resolved. (Although, both eyes work again, thankfully.) I missed an entire day of fun, because I couldn’t keep food down. I’m guessing my problem was a combination of dehydration and pain, but I’m not entirely sure. The skin on my forearms literally fell off, because EDS skin and vinyl arm rests on wheelchairs (with the addition of 100 degree Florida heat) are apparently opposed to one another. In short, I was a mess.

In order to go back to the Most Magical Place On Earth, I’ve had to make a few changes. And since a lot of my blog readers are also living the chronic life, I thought I’d share my changes in hopes they’ll help someone else enjoy their vacation with relatively few medical meltdowns.

I’m leaving Snookie at home.

If you’re new to the blog, you might be wondering why I’m leaving my (very unfortunately named) child at home. Snookie is my wheelchair, and she’s basically been my bestie for the past three years. BUT, I’ve outgrown her in terms of needs. (Yes, I can still fit myself into Snooks.) Snookie, though fabulous, is a very bumpy ride, and Disney World tends to have rough pavement anyway. My neck and back are no longer well-suited for the bumpiness of a manual wheelchair. (I’m sure Joe’s back is duly grateful.)

Instead, I’m renting a scooter for the first time. I ran across an amazing company called “Disney World Scooter Rental” that will deliver a scooter to my hotel and provide on-site user training (Yikes! You can expect to see a video of that hot mess.). I came across DWSR when I saw a post they had made defending their clients who need to use mobility devices in the park. They were responding to a comment on their site about how those with disabilities should just stay home. (People are jerks sometimes, am I right?) Anyway, DWSR replied to the comment in defense of all of us who deserve to enjoy their vacation just as much as our able-bodied counterparts. I instantly fell in love with the company, and I am excited to try their services. They’ve already been awesome at answering my questions when I needed to find a scooter model to rent that wasn’t difficult on my upper body to maneuver. (The scooters that require you to push a button with your thumb to accelerate cause my thumbs to dislocate.) I’ll leave a full review after the trip, but I’m expecting this to be a great experience.

For those of you wondering, the new wheelchair will be named after another super obnoxious reality star- Abby Lee. (Although, I think the real AL is serving time in prison now, so maybe I should name her Free Abby Lee instead.)

Amazon Prime delivers to Disney.

I love Amazon Prime. I mean, it’s shameful how much stuff I purchase via Prime. I have no clue why this hasn’t occurred to me sooner, but I can order stuff through Prime to be sent to my hotel! Why is this so exciting? Last year, I struggled with hydration. Yes, you can get free water at any counter service restaurant in the parks. However, my body isn’t patient enough to wait until I get up, get ready, wait in line for the bus and security, and actually get into the park before I start hydrating. Not to mention that water isn’t exactly the gold standard for hydration when you’re medically complicated. (Electrolytes are important, kids.) My problem last year was that I would tell Joe, “No, I’m fine. I can finish my water bottle from last night rather than buy a Gatorade for $4 before we leave the hotel.” Then, I would get to the park and already be dehydrated, tachycardic, and nauseous from the Florida heat before we started our day.

This year, I’ve ordered water, Gatorade, and breakfast bars for our hotel room. I contacted Disney to make sure this is okay, and they sent me the address (and a warning that I might have to pay a $5 handling fee- basically the cost of 1 gatorade).

For those of you keeping score, that means I’ve found an affordable solution to my Disney related hydration issues as well.

Hot/ Cold packs- duh.

I am nothing without my heating pad and ice packs. I have no clue why it didn’t occur to me to take them with me on vacation. Last year, I was trying to “ice” my head and neck with the condensation on my Disney mug. Not exactly helpful. This year, I’ve bought a few hot/ cold packs (that can be frozen or microwave) to take with me. I don’t plan to take them with me into the parks- although that could happen. My plan is to use them in the evening when I’m trying to melt off some of the pain of the day. Again, I’m not sure why I didn’t think of this sooner.

I’ve addressed mobility, hydration, and pain management issues from last year. It’s not a perfect plan, because the reality of vacation with a chronic illness is that anything can happen. However, I’m learning every year. Joe and I love Disney World, and I don’t plan to give up our trips without one heck of a fight. If you want to join us on our trip, make sure you like my blogger page- CrazyChronicLife We plan to do some live videos of the things we see and do at WDW. I’ll upload pictures, videos, and live events to the page.

Also, it’s a little early to be spilling these particular beans, but Joe and I are planning to release our co-authored chronic illness guidebook as soon as we return from Disney World. I’ll give more details as we get closer to the release date, so, for now, just join us for vacationing fun.

Peace. Love. Health.
And, oh yeah, Mouse Ears.

Rare Disease in Small Town America

The shower head in mine and Joe’s bathroom won’t stop dripping. It’s incessant “drip, drip, drip” keeps Joe and I awake at night. I catch myself nodding my head in time with the drips. It has essentially become the metronome of our existence at home. We’ve tried everything to fix it. We turn the shower on and back off again. Sometimes that slows the dripping- other times it gets worse instead. We’ve cleaned the shower head and the on/off lever. Sometimes we push really hard on the nozzle in hopes that we’ll make the shower completely stop running water. It doesn’t work. Nothing works.

Now, some of you are saying, “Why don’t you change the shower head?” Well, that’s a fine idea, but it’s not exactly in mine and Joe’s skill set. You see, Joe and I have a variety of gifts and talents- none of which include plumbing. I mean, technically, Joe fixed our sump pump a couple months ago, but he used a couple dumb bells and duct tape to do so. I’m not sure that solitary experience makes him qualified to change out shower fixtures. I once fixed the toilet chain in a college dorm toilet (Seriously, Cumberland College, why was I fixing my own toilet?) with a paper clip, but again, that’s hardly professional experience. It has come to this- we need a real, licensed plumber. That comes with its own set of difficulties. It takes days of sitting around the house before a person actually shows up for non-emergency water problems. “Real, licensed plumbers” are way more expensive than mine and Joe’s pseudo- expertise. At this point, we have just accepted that the shower drips, and that’s a strange quirk of our home.

Why do I think you care about my plumbing woes? Well, I don’t suppose you do. However, the drippy shower has become my constant analogy for living life with a rare disease. My body has several medical “quirks.” The quirks are the background noise for every day. But, at this point, I don’t have the time, energy, or money to address the issues. Much like my dripping shower faucet, my aches and pains have become such a part of my existence that while I’m not happy with the situation, I’ve accepted them as part of life. My pain is not adequately managed, and I don’t always deal with it well.

However, small town medicine is about as effective with managing a rare disease as Joe and I are at handling our plumbing situation. I have great doctors, really. I am sure they are great with managing many common illnesses. I feel like if I were a typical patient and went to any of my medical team with strep throat or high cholesterol or any number of other common problems they could handle it beautifully. Let me be clear- my frustration is not directed toward local practitioners. My frustration lies in the fact that awareness is lacking, physician education is lacking, and I’m the one suffering. Unfortunately, when you’re a “zebra” in the medical community, your problems are anything but common. Even when my complaints are “common” there’s always a rare disease (and its complications) to take into account.

The people that are equipped to help me (you know, the ones who have actually heard of my illness?) are hours away. They’re in clinics with a two year waiting list. But, I’ve never really had a medical issue that I’ve thought, “Wow. This should probably be addressed 24 months from now.” That’s not how illness works either. It’s complicated. It really is. For my friends with complex medical issues, medical care is pretty much a gamble. We are begging to be heard (drip, drip, drip), but we are blending in with the masses.

I get it. I don’t expect that any doctor in small town America is an expert in any rare disease. I’m not blaming doctors for this discrepancy. I’m simply saying this life is difficult. My medical issues aren’t easily addressed, and I am tired of being turned away. My illness is a constant dripping that keeps me up at night- praying that at no point does the drip turn into a gush- and knowing that if it does, I’m poorly equipped to handle the fallout.

Peace, love, and health.

T-5 Days Until Disney World!

I woke up to one of the sounds of summer this morning; Joe was singing. (Let’s all have a brief moment of reverence for the loss of my quiet morning routine.) He is a morning person, and I’ll be honest,  I think God’s sense of humor has never been more evident than it is in the fact that I married a person who sings in the morning. Ugh. All the ughs. All griping aside, the sounds of summer mean two things. 1. The college semester has ended, and Joe is home for the summer. 2. It’s time to go to Disney World. (I promise- I’m really excited about both things.)

We are five days away from going to Disney. Joe is totally packed, and I have refilled all my meds- so essentially we’re ready to go. (Yes, I realize I have to pack clothes, as well, but seriously, Joe would rather have me medicated than wearing clean clothes.) I’ve already written about the preparation process of Disney and general advice (Here.), so I’ll spare you the monotony. However, I want to share the pre-vacation prep schedule with you, because I know I’m not the only one in our community who deals with this.

1. Packing. I hate packing.

Joe is totally packed. I don’t even have enough clothes to be decent for a week. Here’s the struggle. First of all, why are women’s shorts so indecent? Don’t get me wrong; I think women (and men) should dress however they’re comfortable. I’m just not comfortable in shorts that’ll make me feel like I forgot to wear any. Also, there’s the whole wheelchair situation. (For those of you new to the crazy, chronic game, my wheelchair’s name is Snookie, and she’s infinitely more fabulous than I’ll ever be.) Some shorts are just not meant for sitting, and my body was clearly not meant for standing. It’s a colossal conflict of interest on the best days. So, yeah, I have to buy shorts within the next five days in my teeny tiny town. Ick.

2. I’m in energy save mode.

My house could stand to be cleaned. Some of the clothes Joe packed could use ironing. You know what? It’s not happening unless magical fairies bestow me with their abilities. That’s okay. It really is. I’m doing everything I can to reserve my energy for the vacation I’ve been making payments on since last July. I’m sleeping 10+ hours. I’m napping when I want to. I’m generally refusing to do anything that I don’t absolutely have to do. Fortunately, Joe is totally cool with that. He actually requested that I save as much energy as possible, and I’m grateful for the suggestion.

3. Planning for the worst- hoping for the best.

Let me be clear. I have no plans of having a health meltdown while I’m in Disney World. Clearly, Joe and I wouldn’t plan a vacation that we didn’t think I could handle. However, I’m trying to be practical. I’m packing books in case I don’t feel like leaving the room one day. I’ve taken every possible precaution for general comfort. (Here’s to hoping my body doesn’t throw a huge EDS tantrum!) I have rescue meds, cool packs, KT tape, and anything else that might be useful. I’m not being negative. I think my week at Disney will continue to be my favorite week of the year. At the same time, I don’t want to be totally unprepared for something that I knew could possibly happen. Besides, who really wants to buy a $9 bottle of aspirin in the most magical place on earth? If my body decides to throw a curve ball, I’ll be prepared (unlike my Braves . . . smh).

I’m excited- can you tell? I can hardly wait to go. I’m aware that it might not be the type of perfect healthy people imagine, but I can almost guarantee that it’ll be Crazy, Chronic Perfection. At this point, that’s all I ask. If you want to follow me on my Disney journey, feel free to friend me on FB (Click here- be my buddy!). I can also guarantee that I’ll upload pictures all day every day, and I’ll try to keep you informed on the whole traveling with a disability thing too.

Hugs to each of you always!

Peace, love, and health.

Sorry, not sorry. Social media is my bestie.

My husband is the ultimate extrovert. Put him in a crowded room and he’ll feed off the energy for days. Me? Well, the very thought of a crowded concert or even a potluck makes me cringe. I love people, but I’m not a person who can work a room. It’s unsettling for me. Add to that the constant fear of brain fog moments, health issues, and general social anxiety, and I’m a hot mess in a crowded room.

This seems to be the lament of many of my chronic illness friends. It’s not that we don’t like people, but rather that being around people is complicated. When you feel bad it’s hard to have the ambition for social engagements. Chronic pain makes it hard to concentrate on the conversation you’re having. And, to be honest, just the general lack of understanding the public has for my (and many others’) invisible illness is unsettling.

Basically, I’m too dang awkward to be in public. Just this morning at church a woman a couple pews in front of me turned around to shake my hand. She was far enough in front of me that she had to lean over the pew between us and still couldn’t reach me. I was sitting while everyone else was standing, because my heart was doing the cha-cha in my chest. In an effort to act like I had decent social skills, I stood up to lean toward her- then stumbled and grabbed the edge of the pew for balance. Then I burst out with a barely intelligible line- “I’m sorry. I don’t stand good.” WHAT?!? Of all the possible things I could have said, why did I say that? Seriously, there’s never an excuse for bad grammar. I should be kept in a cage.

However, on Facebook or Instagram, I’m a completely functional adult. Given the time to think about what I’m saying before I say it, I make sense, and I’m typically grammatically correct. (Full disclosure- I still rely on autocorrect for spelling.) With iPhone edits and social media filters, I’m way more cute and graceful. I need social media to be a normal person. I realize that you’re probably thinking, “You don’t have to be perfect. You want to make friends based on who you are- not a contrived online profile.” I agree with you. However, when illness turns your body into something you don’t even recognize anymore, I think it’s fair to find your confidence for entering the public realm wherever you can find it- even if it’s in the unrealistic world of social media. It’s helped me find who I am again, so I thought I’d share it’s virtues with you.

  1. I’ve made friends. It’s true. When I have exciting news, one of the first places I want to share my news is one of my chronic illness support groups. You see, at one point I had work friends, but the disabled life doesn’t exactly afford many of those. I met people for lunch and coffee, but that’s a little harder to do now. There are weeks that go by, and I don’t speak to any humans in person other than Joe and the lady who gives my allergy shots. However, my online friends are always around, and if they’re not they will be eventually. I’ve had the opportunity to meet people who live a life very similar to mine. I can share victories that don’t seem like victories to my healthier friends. My chronic illness friends understand when I post, “Guess who took a shower, fixed their hair, went to lunch, and unloaded the dishwasher today? This girl!” Normal people would probably not realize this is a huge achievement. My chronic illness friends on social media understand that this is a big day!
  2. I’ve found a way to be a part of something that matters.  As my health has changed, I’ve been less capable of doing a lot of the things I used to do. I can’t volunteer to tutor students or teach Sunday school. My body isn’t very reliable. For a while, I felt like I no longer had a purpose or a way to contribute to the good in the world. However, I learned that the social media world is filled with lonely and isolated people- like me. I can’t be there physically, but I can listen. I can offer prayers and hope and encouragement. Online support groups have been a fantastic outlet and a great way to try helping others rather than focusing on my own problems.
  3. Social media has an off switch (and it’s available 24/7 too!). If I have a migraine or a particularly symptomatic day, I have the option of not looking at social media. Instead of being online when I feel sick and grumpy, I can make the choice to stay away. Of course, you can make that same decision in real life, but it’s more difficult. Real life people involve commitments and explanations. Online interaction happens when it happens. There’s always someone there when you’re ready.

Is social media the perfect answer to all social interaction? Of course, not. It’s important to make friends who can actually be there physically when you need someone. However, if you can’t handle all that yet, social media is an awesome place to start. I’m unapologetically in love with Facebook and Instagram. (Twitter is just not my jam.) Does that mean that I’m one of those people that’s tied to their phone screen a lot of the time? Yes, but it’s only taking away from my napping life or doctor’s office waiting time. I’m okay with that. This life is difficult enough, and if an online support group, online friends, or anything else makes life easier for you- I say do it. Social media can be your bestie too. She’s big enough for all of us, and I promise not to be jealous.

 

Peace, love, and health, friends.

Back off, Bullies.

There was a girl in junior high who knew every other student’s weakness. She knew which kid would be hurt by being called fat or ugly or dirty or (in my case) “frog eyes.” (It’s true. I have huge eyes. I’m over it now. Besides, I like to think they give me an Amanda Seyfried vibe . . . Yeah, okay- maybe not.) She would use this mental list of everyone’s weaknesses as ammunition to wound most effectively. While I commend her excellent memorization skills, I realize now this girl was just a bully. At the time, I thought she just happened to speak the truth that was the most painful, but I realize now that she was intentionally taking aim with the most painful arrows- because that’s what bullies do.

Now, I’ll give this girl a break, because she may have grown up to be a perfectly lovely individual. I don’t really know. I only know that I would never want to be judged based on my 13 year old actions. What I learned from her, though, is that there are people that will wound without any regard for you. Even in the non- junior high world, bullies exist.

The real question is why I’m choosing to write about them now. I’m 31 years old; I should be over crying in the girls’ bathroom about being called “Froggy.” In many ways, I am over it. However, the more time I spend trying to support and advocate for the chronic illness community, the more I realize that we are easy targets for bullies. I keep seeing my friends- my chronic illness family- used and abused, and it makes me angry. So, I’m speaking up- for all of us. Back off, bullies. We’re sick, but we’re not victims. Every type of bullying I mention isn’t necessarily a type I have personally experienced. It is, however, a growing trend I see among my chronic illness friends, and today, I’m asking that you lower your metaphorical weapons.

Adult bullies aren’t as easy to understand and categorize as the thirteen year old “mean girls.” Some grown up bullies think they’re helping or just showing “tough love.” I get that. I’m sure there are times that I have had the best of intentions and just gotten everything very wrong. That’s why today, I’m calling out the grown up “mean girls (and their gender/ age equivalent)” that may have no clue what they’re really doing.

The social media merchant. There are so many online businesses right now, and I applaud anyone who is making money by selling a product they love. That’s awesome. Seriously, you rock, and I admire your effort. Having said that . . . stop exploiting my chronic illness. Do not tell me that your product will cure my genetic illness (that causes my very DNA to be flawed) just because it cleared up cousin Suzie’s eczema. All the InstaGram before and after pictures in the world do nothing for my community. Let me be clear- if you tell me about a great product that you sell, I am capable of understanding that it’s a business. I’ll listen to your sales pitch and thank you for sharing. However, if you are a perfect stranger and approach me just because you heard that I am chronically ill (and this happens way too much) to tell me that if I wanted to feel better I should try your product . . . then NO!

How is that bullying? Let’s think about the situation. A person who is peddling whichever “snake oil” happens to be popular is telling me that I am choosing my illness because I won’t buy their product. You are telling me that buying your product is “an investment in health,” but you fail to see that I spend every day investing every ounce of my mental, physical, and fiscal resources in my health. I’ve seen kind and well-meaning people post on social media that “ . . . if you’re tired of spending money on doctors, make an investment in [such and such product].” Really?!? Your shake, pill, or oil is going to stop my need to see a qualified medical professional? No, it’s not. Think about what you’re saying. I have my doubts that any magic concoction is going to trump the doctors and scholars at Vanderbilt University or Cleveland Clinic. Are you truly trying to tell me that I have wasted my money and time going to these places rather than using your social media cure?

The Pharisee. Let’s be clear; I am a person of faith. I was raised in church, and I am truly grateful for the values of love and kindness I was taught there. I am not calling out those with religious convictions. I have been so blessed with thoughtful people who have prayed for me when my health was in a difficult place. But then, there are the Pharisees. The Pharisees throughout Christian scripture were people who chose to focus on laws- rules of right and wrong- rather than the values of love and kindness Christ came to teach. They were far more concerned with the letter of the law rather than the spirit behind the law. The Pharisees saw every affliction as repayment for wrongdoing- rather than just an unfortunate situation. Sadly, these people still exist today. I recently read a post from a fellow sufferer of chronic illness where she was told that she simply chooses to be ill. A minister told this poor soul that if she had enough faith, if she prayed enough, if she followed Scripture closely enough and did enough good, she would have already been healed.

Yeah, sorry, Mr. (or Mrs.) 21st century Pharisee, but that’s not how life works. My body is human, and it is afflicted with some very un- heavenly illnesses. I refuse to believe that I caused this or that following your list of rules would cure me. I refuse to believe that I was pre-destined to this suffering. So, if you’re telling me that I made this happen- you’re being a spiritual bully. I did not choose to have flawed DNA. I do, however, choose to live every day loving others and being kind. And, if you are walking around telling others that they chose their illness, their own personal, physical hell, you haven’t made that same decision. You’re being a spiritual bully.

My husband (and I only share this because he has given me permission to – and insisted that I- do so) suffers from depression and is under medical treatment- which has been wonderfully successful to this point. In the wake of Robin Williams’ death, he was met with his own personal host of Pharisees. Pastors and other people of conviction took to their pulpits and social media to blame Robin Williams’ death on his lack of faith. I’m not sure that these speakers understood how much their words were undermining the efforts of the medical professionals who were treating some in their congregation for similar illnesses. The truth, however, is that Mr. Williams was ill. He struggled with depression and mental illness. I don’t know Robin Williams’ personal beliefs- they’re his and not my place to pry. I do know, however, that he was sad and ill. I know that others with mental illness need to hear kindness and compassion for his situation- not blaming and hatefulness. My heart broke as post after post and uninformed sermon after sermon we were forced to hear mental illness blamed on weakness, lack of faith, and a poor relationship with our Creator. In fact, the bullies were waxing eloquently on a situation they didn’t understand. Bullies do that. Pharisees do that. Sorry, Pharisees, but I would very much like it if you would leave me and my husband (and the lepers) alone.

The consort. Let’s talk relationships. My husband is wonderful; he really is. However, what I keep seeing repeatedly among my chronic illness friends is that relationships are especially difficult in the chronic illness world. Night after night I message with friends who are facing verbal (and sometimes physical) abuse, because their illness is making them not meet the aggrandized standards of their significant other. I know that guilt. There was a time that I truly prayed that my husband would leave me, because I knew he deserved better than this sick, shell of a wife. My remorse for the person I was becoming was all-consuming at times.

Having said all that, not once in all this grief have I deserved abuse. Trust me- I was abusing myself plenty; I certainly didn’t need more guilt. My husband was fantastic. He knows I’m a hot or that sometimes I go a couple days without washing my hair (much like the college students he teaches), but he has never once made me feel like less of a person. I have other friends who have not had that luxury. Please, spouses, partners, and significant others, listen to me when I say- back off! If your significant other is ill (mentally or physically), love them for who they are- every flawed inch of them. Due to their roles as a disabled/ chronically ill adult, if the house isn’t clean; heck, if the spouse isn’t clean, give him/her a break. They’re doing their best. If you look at the person you profess to love and see them as less of a person because of their illness, you’re bullying them. If you refuse to believe their illness is real- you’re a bully. You have chosen to face life with this person. There is a part of them you chose to love completely. You are supposed to be their cheerleader. You are supposed to be their advocate. If you are anything less, you are being a bully.

For those of you who are in such a relationship, I am sorry. I am truly sorry, and I sincerely hope and pray you eventually receive the understanding and deliverance you deserve. This treatment is toxic to your illness.

I fear in writing all this that you think I’m a jerk. The last thing I want is for you to think that I sit around waiting to call others bullies. (I’m fairly confident that would actually make me a bully, and that’s certainly not my intention- and that would defeat my entire purpose.) I simply want to make everyone think. I want to make others realize that it is not okay to blame someone’s illness or circumstance on that person. Even if you can’t see something, that doesn’t make it a figment of someone’s imagination. Believe me. Believe that I didn’t choose this life. Believe that I wanted more than this for my life, but I understand that this is the genetic hand I’ve been dealt. No one gets to bully me for something that I couldn’t escape.

You, my sweet sufferer of chronic illness, no one gets to victimize you either. We’re here. We’ve got each others’ backs, and, today, we’re asking that the bullies lay aside their weapons. So, bullies, back off. We mean it. We aren’t your victims, and we will retaliate- in our own crazy, chronic way. And, seriously, who even knows what that means?

Peace, love, and health, friends.