Tag Archives: Relationships

“How are you?” and other tough questions

Joe and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation- it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once said to him (not an exact quote), “I understand Tiffany’s illness, and I think people believe she’s sick. It’s just hard for them to understand when they see her out and she’s smiling and bubbly.”

Hmm. Okay, I’m typically the great empathizer, so I can try to understand what others see. I can understand to a degree that it’s difficult for people to see a 30 something with a loud voice and ridiculous laugh- and reconcile that with the stories they’ve heard about me being ill. I suppose I can understand how it’s all confusing.

But, geez Louise, people! How on earth am I supposed to act? If I’m in public, I try to act like I belong in public. I don’t leave the house if there’s no chance of me staying conscious. When people ask how I’m doing, I say, “Fine” or “The best I can” and I smile. That seems normal, and that’s how I’ve chosen to handle my illness. If I know that I have an event to attend (even if it’s a seemingly ‘no big deal’ event like dinner with friends or an evening basketball game), I prepare the entire day beforehand, so I will seem “fine.” I rest more than normal. I don’t lift anything or do any exercise, so I can protect my joints. I eat foods that aren’t likely to make me sick. There’s a lot of work that goes into appearing “fine.”

The problem with so many people who live in my world of chronic illness is that we never fake being ill- but we’re masters at faking being well. It makes people uncomfortable if I’m honest about how I’m feeling. Think about it. If you say, “Hi, Tiffany. How are you today?” and I reply, “I feel horrible. I just popped in a dislocated elbow, and I’m really nauseous now” then the conversation is awkward for everyone. You suddenly feel like you have to offer me some sort of comfort (You don’t.). I feel awkward, because you’re pitying me. It’s just more difficulty than I want to add into running my errands or joining my husband at a football game.

An acquaintance recently asked if I’m “doing better now.” Well, that’s complicated. In that exact moment, I had been running errands for a bit. I was drenched in sweat and shaky. In that moment, the answer was “no.” In life in general, I have a chronic condition. There will always be good days and bad days. There will more than likely never be a time of being better or worse, because symptoms seem to come in unpredictable waves- the kind of waves that sweep you off your feet and make you eat sand and get salt in your eyes. However, the best response I could give this person- who had all the best intentions- was to say, “I’m trying my best to do better.” Cue the smiling and awkward giggling.

So, for the sake of everyone’s sanity, I’m going to keep giving oversimplified answers to difficult questions. Please, don’t misunderstand. I appreciate that people include me in small talk. I choose to keep my answers simple- even if they don’t accurately describe my current condition. I don’t feel like I’m lying- I’m shielding people from an uncomfortable truth. We all do it to an extent.

To the people who don’t feel like I act “sick enough,” I have no apologies. I’m doing my best to handle this life- same as you. I’m open to questions, because I understand that my reality is quite different from that of my peers. Let me share with you about my world. There are needs and concerns that exist for my chronic illness friends that others our age have never considered. I don’t expect those who don’t live this life to understand. I don’t fault anyone for not understanding either. I’m simply asking for the benefit of the doubt. Trust me, with this body, I’m bound to prove to you that I’m sick if you watch for a bit.

Peace, love, and health, friends.

A Dream is a Wish Your Heart Makes . . . When You’re Falling Apart

Based on that title alone, I’m fairly confident Disney will never ask me to right lyrics for their next great princess anthem. That’s okay, because my heart is set on writing of a different sort entirely. Want to know a secret? I started dreaming of being an author when I was an awkward high school sophomore (who used to lock her bedroom door and play pretend in order to imagine how my newest story should transpire). But . . . dreams are scary. If I tell people and fail miserably, you’re exposed. Everyone knows that you tried and failed. That’s painful, and I’ve felt more than enough pain in my 31 years.

Why am I telling you this now? Because jumping out on a limb is scary enough- why not ask the blog world to watch?!? I have an e-book! I’m a sort of author. It’s on Kindle only, so I haven’t realized the dream of having a physical book to hold in my hands. It was compiled by Joe, because the sick life is complicated and his help is necessary. It’s not the exact dream I imagined, but at the same time I have a certain awareness that something I’ve wanted for a long time is finally happening.

When I became sick, I suffered the loss of so many dreams. I lost the dream of being a mother. (I’ve been naming my future children since I learned to spell.) I left my dream job as a middle school teacher. The life I intended to live slipped away. However, I’m learning that God in His infinite wisdom places new dreams in our hearts- or in my case, He rekindles old dreams that seemed unattainable. When I look at the series of events that led to this moment, I’m amazed.

I married an author– a legit author with 10 books at real, legitimate presses! (Don’t worry. I don’t even aspire to surpass him.) At the time we married, I thought it was cool and respected his accomplishments. I never dreamed that the most painful part of my life (the whole illness/ disability thing) would lead to me wanting to write again. I could have never fathomed that my super author husband (Is that his new super hero name? Super Author!) would encourage me to pursue this inkling of a dream. He’s the person who encourages me through my process (which includes a lot of procrastinating and Netflix) and gives me pep talks when I complain that I’ve sold exactly 2 books in 2 days. He believes in me, and he legitimately knows what he’s talking about (in regard to writing, Tennessee football, church history, and making baked potatoes- beyond that, his advice isn’t worth as much).
While I’m deep in the process of writing completely new material, I’ve released an e-book of my blogs as well as some new material. Why publish previously written blogs?
1. Blog readers have asked for an offline version of blogs to give as a gift to newly diagnosed friends. While this isn’t a hard copy, it’s easily purchasable and able to be sent to anyone with an e-reader or smart phone.
2. This gives me a practice run before my new material is ready for publishing. There have been some serious hiccups in this process, and I’m hoping to get those out of the way now- before my new material releases.
3. If sales go really well, I might be able to buy a Diet Coke at Disney World next year.
Ultimately, I’m new to this process and learning as I go. I’m touched and honored that anyone would purchase my writing. It’s an odd feeling to have someone purchase something that contains some of the rawest parts of your heart. So, thank you for reading my words. Thank you for sharing my heart. Thanks for letting me realize a new dream I never believed could happen.
Peace, love, and health, friends.

Sorry. This post wouldn’t be complete if I didn’t include a link to the book. Thanks for understanding my shameless self- promotion.

Preview my book HERE, please!

The Interesting “Side Effect” of Being Chronically Ill

When you become sick you enter into a secret world you never imagined you would even visit. You enter a world where “dress up days” are for doctors’ appointments, and showers are a luxury rather than a routine. You trade fashionable clothes for pajamas. Girls’ (or Guys’) Night Out is exchanged for a snuggle night with your fur baby and Netflix. (Let’s all take a collective moment to appreciate all that binge watching has brought to our lives . . .)

And all of that . . . well, it sort of stinks. I like yoga pants as much as the next 30 something, but it would be super nice if I were wearing them because I like the look rather than because jeans will cause my hip to dislocate. There are a lot of unfortunate tradeoffs when your life deters into the world of illness, and I won’t lie- I’m typically not a fan of all this life offers.

However, there is one super fantastic thing that happens when you’re chronically ill. Even though I would gladly exchange health for this perk, I’m glad it exists. It’s basically the only redeeming quality. When you are chronically ill . . . you get an extra family. In my first few days and weeks of realizing that illness had become a part of my life, I had never been lonelier. It wasn’t until I saw the phrase “chronic illness” that I realized I had a new identity. I was chronically ill. Armed with that phrase, I began searching for “my people.” Thank God for social media. Thank all that is good and holy that I found Facebook groups for the chronically ill. You know what? No one tells you when you become chronically ill that you inherit an entire family of supporters through Facebook, IG, and Twitter.

I get it. I know there is more to life than social media. I understand the risks of spending your life connected to social media rather than the life that is going on around you. However, the life that is going on around me isn’t terribly glamorous. Today, I’ve kept up with my medicine schedule, taken injections, and worried about my bladder pacemaker. Does that sound like something you wouldn’t want to be distracted from? Yeah, I didn’t think so. Don’t get me wrong. I have a wonderful family and friends. They do all they can to support me. However, it doesn’t change the fact that they haven’t traveled this exact road of illness that I’m experiencing.

Why does it matter? A few months ago I posted to one of my chronic illness support groups that I felt discouraged. I explained to them that I had been trying to go to the gym, and I was accumulating far more injuries than progress. You know what? They GOT it. My online family reassured me that effort counts. They told me success stories- as well as their stories of dismal failures. Of course, every human has experienced health gains and fails, but only the chronic illness community can truly understand the struggle. Only my chronic illness family understands the pain of doing your best and having a body that just won’t cooperate. In that moment- in so many moments- having someone to say, “Yeah, I feel your pain” means infinitely more than advice.

In so many other instances, I’ve seen friends who had a daunting diagnosis, a failed relationship, or a traumatic doctor’s office experience receive support and love from dozens of people who have never met them. We support each other. We empathize. We ultimately strive to hold each other in this painful game of life as well as possible. For that, I am beyond grateful.

Years ago, before my health struggle became blatant, I would have told you I have all the friend and family support I need. I would have told you that it’s impossible to trust friends you have never met face to face. I would have believed that face to face encounters matter more than the relationships we forge through online communities. To some degree, I still believe that. However, I am forever grateful that I have an online family that understands the “sick life.” I love that people I have never met know that I love Disney more than any adult should, so they tag me into cute Disney memes. I appreciate that my odd obsession for sloths hasn’t gone unnoticed by my Facebook friends. I am grateful that I exist in a world that thinks I’m “normal.” The real world thinks I’m little more than the victim of unfortunate circumstances; my online chronic illness family knows that I’m doing my best. They see my struggle because it mirrors their own situation. They know I’m doing my best- even when that means I’m stuck on the couch for days.

Chronic illness bites. It’s a life sentence without parole that I wouldn’t wish on anyone. However, there is one wonderful side effect- online support. It exists, and it makes my days and nights more tolerable. As much as I appreciate my online family, I am fairly confident I’m not the only one. I’m guessing that throughout the community of chronically ill people, there are many who have benefited from the love and support of their new online family. That . . . well, that restores my faith in this chronic life. We have each other to lean on, and I know beyond a shadow of a doubt that really matters.

Have I mentioned that my online family is also great at suggesting binge worthy shows from Netflix? Yeah, that makes them awesome too.

Peace, love, and health, friends. 

Want more Crazy, Chronic Life? The blog has been compiled into an e-book via Amazon. Check it out, please! 💙  Newly Wed and Stuck in Bed- Chronic Illness, You Don’t Know ME!Click here to check it out!

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.

Taking a Chronic Illness to the Gym- the loftiest of endeavors

I hadn’t been to the gym in a while until today. A few weeks ago my body went all “Let’s throw a fit and make Tiffany black out and have chest pain,” so it slowed down my work out flow to say the least. Today I made it back. I’m doing a very amended work out (one hour on the recumbent bike with no resistance- yeah, I know. I’m a beast.), but I’m trying. I figure as long as I’m still trying, Joe isn’t married to a potato, and that’s a positive thing. (I think- I mean the guy really likes potatoes). Since it was my first day back, I decided to record my thoughts- not because they were especially brilliant, but because I knew my crazy, chronic family could relate.

Sitting in the car- I’m not going in. Everyone looks skinny and healthy. Holy moly, that girl is lifting some serious weight. (I am too, but only when I get myself out of the car . . .) Is the whole stinkin town training for a marathon I know nothing about? Do I have any chips in my car? That seems like a better decision at this point.

Walking in the gym- Don’t let the man who works here notice when I scan my check-in card that I haven’t been here in close to a month. Dang it. He totally knows. He said, “It’s nice to see you.” What he’s really saying is, “It’s nice how you drug your lazy self back in here.” (Actually, no. He’s so nice that he would never say such a thing, but the guilt is real.)

Beginning the work out- Where do I start? What is everyone else doing? Oh, yeah, I can’t do that. Abs. I can work on abs. I think somewhere along the way a doctor told me that working on core stability would help my symptoms- or maybe I heard that on an infomercial. Sigh. I have no clue what I’m doing. The ab machine looks least likely to dislocate something, so I’ll do that.

The actual work out- Ouch. Ouch. Should working abs make your lower back feel like it’s going to split open? Is that normal? It’s probably normal. No one else is crying. I’m not going to cry either. Is that a tear? Nope! Just sweat! #killingit A man just asked me if he could work through. What does that even mean? Is he asking if he can work through his problems? I certainly hope he can. Should I offer to pray for him? This gym thing totally confuses me.

I’m moving on to the recumbent bike. It’s totally not made for the under 5 foot crowd, but if I pedal with my tip toes it’ll work. Holy cow. Is that girl still lifting weight? There’s no way she weighs as much as the weight she’s lifting. I must find out her secret. Oh wait, her secret is probably joints that don’t dislocate from simple tasks. Maybe I’ll ask her about that. I won’t. That would break my cardinal rule of gym attendance- don’t speak or make eye contact. They’ll never realize what a hot mess I am if I just don’t speak.

How long have I been on this bike? I’m only pedaling an hour. Darn it. It’s been 6 minutes. Why doesn’t time go by this slowly when I’m drinking coffee and binge watching One Tree Hill? Oh yeah! I can watch OTH while I pedal. No, I can’t. Someone is sitting next to me talking loudly. He’s talking about how nice it would be to be 30 again. Maybe so, dude, but 31 is a struggle right now.

The end! The beautiful end! I made it! I survived an entire hour, and I only stopped once to move a kneecap back into place. (Tricky little booger) I didn’t black out, double over in chest pain, or have any dislocations that I couldn’t handle on my own. YES!!

It can’t be a coincidence that my gym is located next to a Sonic. Time for a milk shake!

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.

 

 

I can’t. I’m raising a chronic illness.

It’s only fair that I begin this in the most appropriate and reverent manner possible, so I’ll begin by saying that moms are rock stars. Seriously, if you’ve stuck with and cared for  a child through all of their horrible ages and phases, you’re a hero. I don’t know how you did it; I can barely remember to put out fresh water for my dog, Zoey. If you’re struggling with a chronic illness and still managed to take care of a child (or, good grief, multiple children), you’re a super human, and I have total respect for all you do. So please, momma friends, don’t judge me to harshly for referring to myself as a “mom.” I realize I don’t know your struggle.

Now . . . having said all that, I don’t fit into any logical groups for people my age. Working women? Nope. My main job is the care and management of my health- and keeping Joe from looking really mismatched and disheveled. Motherhood groups? Yeah, I have a dog- no tiny humans. However, the more time I spend around mothers the more I realize that my chronic illness acts remarkably like a toddler. (Don’t take this analogy too far, folks. A child is by no means a disability- I’m just having a little fun here.) Here are things I’ve heard mommas say lately that I’ve oddly identified with from my life of “raising my chronic illness”.

I would have loved to come, but [insert cutesy toddler name] needed a nap. She just won’t behave without one.

I feel ya, girl. The last time I didn’t give my chronic illness (and, you know, me too since we’re connected) a nap before we went out among people, I ended up whimpering in a bathroom floor. I also missed the event, because my symptoms were having a diva moment. My illness is a bit of a monster like that. If I don’t let it rest before we venture into public, it will throw a tantrum that rivals any sleepy toddler’s meltdown.

For the last UT home football game (my husband, Joe, is a SUPER FAN and season ticket holder), Joe and I met friends for lunch before the game . . . and by the time lunch was over, I was FINISHED. I was tired, my chest hurt, and I felt like I could cry if anyone looked at me. I ended up giving away my ticket and going back to the hotel to take a nap instead. Have you ever heard of anyone over the age of 5 who misses events they’ve looked forward to because they need a nap? Nope, me neither. Thanks, chronic illness. You couldn’t behave for a couple hours.

I can’t stay out late. The baby will get restless.

Yep. Anything longer than half an hour, and I’m a wiggly mess. I suppose this is a little different than taking a toddler into public. I mean, toddlers struggle because they have a short attention span. I don’t exactly have a remarkable attention span, but the real problem is sitting still. If I’m sitting for more than half an hour, my blood will pool, and I’ll feel faint. My ribs will shift, and I’ll feel like I can’t breathe. I’m a mess. You know those kids at church or the movies that pace back and forth/ up and down the aisles? I’m one step away from being right behind them.

Recently, Joe and I met a friend (a fellow POTSie) in downtown Nashville to listen to music. She and I (and our illnesses) behaved beautifully through dinner. When we tried to listen to music, we were both falling asleep in the booth. My poor husband looked like he had drugged two women and brought them out for the evening. Nope. Just tired. So tired.

Just as we were going out the door, she threw up all over me!

Ughhhh . . . yeah, I get it. Babies can be gross sometimes, so can chronic illnesses. For every time a mother has gotten ready to go somewhere and been unexpectedly covered in a smelly bodily fluid brought forth by her toddler, yeah, it’s happened to me too- except, you know, it was my own body that was expelling its contents. Chronic illnesses are messy and unpredictable- just like babies.

Once, Joe’s dad was giving the commencement address at a graduation ceremony, and Joe was supposed to introduce his dad and give the opening prayer. What did I do? I started projectile vomiting minutes before they were both going on stage. Fortunately, I was able to regroup, drink some water, and make it through. But right up until the minute the program started everyone was more worried about my diva disorder than the event we were there to celebrate. Yeah, vomit ruins everything. It just does.

Can you tell I’ve had fun coming up with similarities between my illness and a cranky toddler?

Of course, there are a number of reasons that I would rather raise the crankiest toddler than deal with illness, but clearly I haven’t been given that choice. I mean, toddlers have their redeeming qualities- they’re cute; they say funny things; they will likely grow into something in which you can take pride. I have serious doubts that my illness will ever do any of those things. For now, though, I’m okay with laughing at the similarities between the two. So, the reason I can’t go to the movies or on a long road trip? I can’t. I’m raising a chronic illness.

Peace, love, and health friends.