Category Archives: social anxiety

Overcoming the Fear . . . of New Places

I’ve talked a lot about how chronic illness has changed me. It’s changed everything from my physical appearance to my patience. One thing that continues to surprise me, however, is how much more nervous I am about new experiences now. There’s just so much that could go wrong. It may not- it typically doesn’t go quite as wrong as I imagine it will- but there’s always the very real possibility.
Let me explain using a real-life example from today.
Joe and I decided to visit a church where some local friends attend. Now, before this whole chronic illness and rapidly deteriorating joint situation began, I would have never thought twice about visiting a church. However, I’m a hot mess on any normal day of the week. Add to my normal hot mess having to dress like a real adult (you know, something that isn’t a Disney tshirt and athletic shorts), having to be ready by a certain time, and actually leaving the house before noon (I don’t really get a functional blood pressure until later in the day), and I’m an accident looking for a place to happen.
Today, while walking up the ramp into church (Shout out for an accessible entryway!), my knee quit doing the whole “knee thing.” I crashed into the side of the church to keep from falling. Joe, who is totally used to such shenanigans responded with, “You okay, Margaret?” I, of course, am now convinced the entire congregation thinks I came to church drunk and my name is Margaret. The second faux pas is way worse though. Today was Lord’s Supper/ Communion day at the church. It’s a beautiful service that I’m always humbled to participate in, but leave it to me to turn it into a debacle. As the deacons were passing out the communion wafers, they motioned for me to pass the plate to Joe on my left. Cool . . . except holding anything is complicated with EDS. I overestimated how hard I needed to hold onto the plate, my hand jerked awkwardly, and I spilled the symbolic Body of Christ on the floor in front of the back pew. Joe and I tried to clean it up- but those little wafers fall apart like chalk. And, you guys, it was just bad.
Now, don’t get me wrong. Church was great. No one asked me to leave- or even to stay behind and vacuum under my pew. All in all, I’ll call the day a success. However, that story brings me to this point- taking a chronic illness into public is a bit like taking a rambunctious toddler out among non-toddler humans. You have no clue how it’s going to behave. Yes, we all have socially awkward moments, and today’s mistakes could have happened to an able-bodied person, as well. However, the fact remains that the combination of chronic illness and me has turned me into a one woman wrecking crew.
There was a time when today’s events would have humiliated me. I would have told Joe I was never going back to that church again. However, at this point, I’ve accepted that these things just seem to happen to me. My body is unpredictable, and I doubt that’s going to get better with time. Here are a few things I remind myself to keep from hiding under my bed when social interaction turns into social embarrassment.
I’m not a celebrity.
I’m a somewhat normal 32-year-old woman living in Campbellsville, KY. Paparazzi could not possibly be less interested in me. I’ll never be featured on the cover of US Weekly (Thank goodness.). So, why on earth, do I think that anyone is enormously preoccupied with how I act? You see, in my mind, everything I do is amplified times a million, and I’m convinced the whole world is offended by me. I spend serious time stressing over my inability to sit and stand at the appropriate times during church. I just know that someone is hurt by my seeming irreverence. The truth? Most people probably don’t notice, and those that do are probably more worried about whether anyone is noticing that they’re singing off key or that their breath smells funky. I’m really not that big of a deal.
New experiences are worth the risk.
Today I participated in a beautiful church service. I met new people and visited with others I already knew. I even got a sucker after the children’s service. (I’m not sure how the minister knew I would really enjoy a sucker, and I’m seriously hoping I wasn’t staring at the candy box as though I’d never seen such delicacies before.) The experience of worshiping with other believers, sitting beside my husband during church, and seeing welcoming smiles on the faces of friends and strangers far outweighs any embarrassment I felt. I have yet to have an embarrassing public experience where I felt that my embarrassment wasn’t worth it to do something fun or new (although there have been a couple close calls).
People are generally great.
We hear a lot of stories about the mistreatment of those with invisible disabilities. I get it. There are people in this world who are jerk faces. However, for the most part, people are good. The deacon whose plate of communion wafers I threw in the floor? He chuckled good-naturedly and waved his hand as if to say, “Don’t worry about it.” The people sitting around me who noticed that I didn’t stand for all the opening music? They smiled and nodded and shook my hand when it was the time to do so.
The moral of the story? I’m a mess. That’s okay. People are cool. Keep taking risks- and learn to laugh at your failures along the way.

Peace, love, and health, friends.

Click here to endorse me for WEGO Health’s Patient Leader award, please.

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.

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.

Chronic Christmas Craziness and Other Communicable Diseases

Confession time, friends. Yesterday, I had a full Clark Griswald-esque Christmas meltdown. You know that scene from the movie when he finds out his long awaited Christmas bonus is nothing more than a membership to a jam of the month club? (Which is a pretty dang cool gift, if you ask me.) He proceeds to totally have a total freak out of epic proportions . . . yeah, that was me. Now, before you label me a Scrooge and believe that I need to be visited by some of Charles Dickens’ ghosts, let me explain.

Holidays are tough for the chronically ill- really tough. For me, I feel like holiday time exposes all my flaws. The rest of the year I can hide that my house isn’t always neat and organized. I can keep you from noticing that I don’t have the energy to wash my hair (or even shower sometimes) more than every other day. My cooking short cuts (I’ve got to make a blog about that soon!) can fly under the radar. But at Christmastime, you’re going to see these things. When I sit around with family members chatting about the past year, you’re going to notice that I start lying down or leaning over- because for some reason I can’t sit up for long without my ribs moving out of place. You’re going to see that my Christmas cooking came from Kroger (grocery store, non-US, friends!). And, if you look closely, you might even notice that Joe has to open bottles and cans for me, because my hands won’t cooperate lately.

Although these are all parts of my daily reality, Christmas makes me feel much more exposed. Don’t get me wrong- my family is fantastic. I can’t think of a single member that would tease me (well, they might good-naturedly tease me- but NEVER hurtfully) for the things I cannot do. I’m very blessed to have a group of people who love me and do not think less of me when I just CAN’T do something. The problem lies in that I hate looking pathetic. I hate looking like that hot mess that just can’t get it together. There’s nothing more dehumanizing than being pitied.

So, anyway, back to last night’s meltdown- here’s how it went down. I was trying to cook real food- things that didn’t come pre-made from Kroger. In the process, I cut my finger, dislocated my shoulder and a finger, dropped essentially everything I touched, and somehow my blender full of boiling strawberry puree exploded. (FYI- If you’re covered in boiling hot strawberry puree and you yell for your spouse to come help you, FIRST explain to him that the red super-mess is NOT blood. The poor guy was preparing to apply pressure!) Somewhere during all of this, in a moment of panic (and chest pain that’s been haunting me for a couple days) I sat down on the kitchen floor and wailed, “I think I need to CRYYYYYY!!”

Poor Joe. He’s been through these meltdowns enough to know the protocol. He brought me a chair and a Cranberry Sprite Zero (yum!). He reminded me that everything that we were preparing for was fun- not something to freak out over. He even reminded me that we are celebrating with people that we love (and even like) who accept us exactly the way we are. He’s right. I just got caught up in the craziness of wanting everything to be perfect.

Here’s the truth. I will never have a Pinterest-perfect Christmas. My Christmas cards will be store bought, and my handwriting will probably be illegible after the first few. My gifts will always come from whichever store looks the least crowded- or better yet, Amazon. I can’t remember to buy things like bows for gift boxes or name tags. Joe did the wrapping- it’s not exactly his greatest gift in life. The gifts we bring are lumpy; the paper is ripped and patched, and the recipients’ names are written on the side with Sharpie. To be honest, Im not even sure if I put the correct name on gifts. So it’s possible there will be a gift shuffle at the end because I have given my brother the Princess castle intended for my 2 year old niece.

But . . . post-Griswald-esque meltdown, I’ve decided I’m okay with the imperfections. I may not feel fantastic sometimes; I’ll excuse myself and rest. I may not be able to get food on the table on time (you know, that food I just have to re-heat because I ordered it from Kroger), but we can just eat later. I might lie down while I visit with my family; I’m sure they’ve seen me do stranger things. I’m going to relax as best I can and enjoy this crazy, chronic Christmas.

So, um, could all of you remind me of this over the next few days?

Merry Christmas, chronic illness family. May your heart be filled with the hope and joy of this very special (and sometimes crazy) season.

Peace, love, and health friends.

Wheelchair Etiquette- The Continued Saga (and Trevails) of Tiffany and Snooki

Every time I spend a couple days on wheels (AKA in my wheelchair, Snooki) I realize that the world is sadly lacking in basic wheelchair etiquette. Now, I’m not going to attempt to answer questions like, “Do I hold the door for someone in a wheelchair?” or “If they seem to be struggling, should I offer to help?” The truth is- I have no idea. We are as varied and different as the same number of able-bodied people, so how could I possibly know? (But, please, if you see me struggling with a door whether in a wheelchair or not, please help! I’m probably deciding if entering/ exiting is really worth dislocating my shoulder.) However, there are apparently a few things that need cleared up to make my (and others’) rolling days a little simpler and possibly less frustrating. Below you will find a few helpful hints about what not to do upon seeing someone in a wheelchair.

Hint #1- Do not touch the wheelchair user.

Just don’t do it. Unless you are shaking hands, giving a high five, or fist bumping . . . there’s just no reason to touch a person you do not know. Let’s think of it this way- You walk into a room. Everyone else is taller than you (Fun wheelchair fact- you’re stuck at butt height to all adults when you’re in a wheelchair. Lovely, just lovely.). Now everyone starts patting your head, bumping into your legs, and tickling your tummy (Yes, that has actually happened to me.). My guess is you would start feeling a little claustrophobic and ultimately disdained. It’s hard to feel as though you’re on equal footing with the rest of the adults of the world, when the other adults of the world treat you like a particularly ugly puppy.

Hint #2- Do not talk in funny voices to the wheelchair user.

Again, there are exceptions. For example, my voice is just funny, in general. (Oddly reminiscent of Velma from “Scooby Doo” . . .) That would not keep me from speaking to a person in a wheelchair, obviously. If a normal adult conversation necessitates using a funny voice, by all means, please do. We wheelchair riders (much like “normal” walking folk- *gasp*) enjoy a silly story. What I am talking about is using a voice that isn’t meant for adults with an adult simply because he or she is in a wheelchair. Case in point, while rolling into a football stadium with my husband, a security guard spoke to me in a (not at all impressive) Donald Duck voice. It some sort of- “Quackety-quack. I bet you’re not *quack-quack* sneaking anything in! Quack!” Now friends, tell me how that is EVER appropriate. I mean, it’s strange enough that he would assume that because I’m in a wheelchair I wouldn’t possibly think to sneak in contraband. (For the record, I was NOT sneaking in contraband though.) It’s even more strange that he used a duck voice with an adult. Again, it’s hard to feel like you’re not inferior to the walking world when the walking world is using baby talk to speak with you.

Hint #3- Do not attempt to diagnose the wheelchair user.

This is a tough one. To be entirely honest, before I became a part time Snooki user, I probably assumed that people in wheelchairs could not walk at all. I, on the contrary, go for walks in my neighborhood, walk to get my groceries, walk inside my house, but use a wheelchair for long distances or particularly unfortunate days health wise. I realize this is confusing, but I also realize this most certainly does not mean I am faking my need for the Snooks. Not long ago while using the wheelchair, I stood up to walk into the bathroom (because opening a bathroom door while trying propel myself through it will most certainly end in a dislocated shoulder). A young man 10-15 feet away said, “Oh my God! She can walk! She was just using a wheelchair, but she can actually walk.” This doesn’t make me angry; it’s not like he insisted I crawl to the bathroom. It’s just awkward. Yes, I can walk; the walk to the bathroom is perfectly manageable for me. It isn’t manageable for all people using a wheelchair. Much like some people who can walk long distances are capable of running a 5K and other aren’t. What frustrates me, though, is that people who are not using a wheelchair somehow feel qualified to comment on who should and should not use a wheelchair- as though being able to walk qualifies them for such assumptions. What if people in wheelchairs started calling out everyone with a limp or who stumbles? “Hey, hey you? You stumbled. You aren’t good at walking. I’m in a wheelchair, so I know this. You should be in a wheelchair too!” See what I mean? Being in a wheelchair does not make me qualified to diagnose a walker as incapable of walking, and being a walker does not make someone capable of diagnosing a wheelchair user as not needing the wheelchair.

Hint #4- Teach your children that people in wheelchairs are, um, people (who happen to use wheelchairs).

One of the most awkward moments I face in a wheelchair is when children are involved. You see, I don’t mind at all when a child says, “What’s wrong with you?” or “Why are you using a wheelchair?” I’m not going to give them a long, graphic response. I’m going to say, “Sometimes I can’t walk very far, and my wheelchair helps me to be able to go the places I can’t walk to. I named it ‘Snooki’.” That’s it. I get to encourage a child’s curiosity, and a child learns that someone who looks different isn’t something to fear. Everyone wins. But . . . when a child says, “What’s wrong with you?” and a parent/ guardian angrily shoos him/her away out of embarrassment, no one wins. You see, I’m left feeling like some sort of animal that the parent was afraid of provoking, and the child has learned that people who look different are something that makes parents uncomfortable- so they become uncomfortable too. Your child is more than welcome to ask nosey questions. If I don’t want to answer or think the answer is too much for them, I’ll ask you for help explaining. But I never, ever want a child to be afraid of me, because I’m different. It’s okay. Please let them be nosey; let them pry. It’s perfectly, perfectly fine.

This brings us to the final and most important point.

Hint #5- Look at the PERSON in the wheelchair- not the wheelchair.

Everyone one of us has something that makes us different. Even when I’m walking, I’m limping and stumbling along with dislocating hips and shifting kneecaps. There is always something that makes me self-conscious, and I think that makes me very, very human. See, that’s the thing. I sometimes feel a little like I’m step behind the rest of the adult world, because I’m using a wheelchair. But, if we could all sit down and talk, we would probably realize that we all have something that makes us feel that way. All I’m asking is to be treated like any other fellow human. When you’re meeting a fellow human in a wheelchair, don’t make assumptions about them. Talk to them just like anyone else, because we are as varied and unique as all the other people you will meet.

Finally, it took me a while to write the post- partially because Joe is researching for a new book about the subjugation of women throughout history, and he kept reading crazy and disturbing things aloud, but also because I was a little afraid. You see, I would rather you fail to follow ANY of my hints than for you to avoid me for fear of offending me. I’m guessing that most of my friends on wheels feel the same way. I’m not easily offended; I’m not even particularly sensitive about the wheelchair. If you say something completely offensive, I’m more likely to ask you to clarify or just to give you the benefit of the doubt than I am to walk away and meltdown. At absolute worst, I might make a joke. Recently, Joe was pushing me in Snooki, and we were attracting a lot of stares. Joe’s response was to yell, “Hodor! Hodor!” as he pushed me. (Game of Thrones fans, you’ll get the reference.) I will never try to make you feel bad or less than anyone else. I promise. All I’m asking is that all of us try to see each other as fellow humans- crazy, chronic illness humans or not.
Peace, love, and health friends.

My social skills are still in tact- sort of.

I actually wrote this blog post about a year ago, but I wasn’t comfortable with posting it once it was written. It’s not that it’s deep emotional stuff, but it’s a little embarrassing. I realize that it’s strange that I get so excited about getting out of the house, and I realize that it’s even stranger that I get so nervous about it. The truth is, a year has passed, and I haven’t taken many more social risks. I’m okay with that. I’m still hoping there will be a day when I snap out of it and become unapologetically me- capable of being bold and brave entirely on my own. But I also realize that I’m a work in progress, and it probably won’t happen overnight. For now, I have plenty of people to keep me adequately socialized from home or via phone/ Internet. I also have my new Facebook support group friends, and I am completely blown away by the love and acceptance they show. So . . . you know, it’s all good.

A side effect of being a ‘professional sick person’ is that you don’t necessarily see a lot of people. Seriously, several days (and I really mean several) go by, and I don’t speak to anyone but Joe, my mom, and Zoey (the dog). This is partially my fault (because I really hate talking on the phone- why can’t people just text?), but I really believe that my social skills have suffered. Those of you in a committed relationship know that there are conversations that you have with your significant other that just are not acceptable among the general public. I mean, Joe handles my late night, incoherent ramblings (so does my mom via telephone), and no one else in this world should have to put up with that.

But today, I had lunch with a new friend. I woke up (technically, Joe and Zoey woke me up); I got ready, and I drove to a restaurant near my house. Simple, right? Not so much. See, in my two years of being too sick to work, I’ve not exactly been a social butterfly. As a matter of fact, I realized this was the first time since I got sick that I went to lunch with a peer without Joe there to keep the conversation moving. I was super stressed. I mean, what if I was at lunch and got sick? Normally Joe is with me, and I can just say, “Let’s get out of here before something dramatic/traumatic happens.” But, with someone new, can I do that? I mean, what if she thinks I’m crazy? Oh no, what if I am crazy?

Can you tell by now that I was totally working myself up over nothing? Somewhere in the two years that I’ve been staying at home I’m pretty sure I developed social anxiety. Now, it’s only fair that I say at this point, that my new friend is totally cool. (I should have asked her if it was okay if I blogged about her, so I could say her name. However, it’s sort of fun that I can’t say her name . . ., because you’re totally assuming I had lunch with a major celebrity today, right?) I could have fainted, taken meds, possibly scratched my face with my feet, and I think she would have been fine with it, amused, but fine.

The reason I shared this with you (other than to brag about the fact that I made a friend!) is to point out that relationships when you have a chronic illness are different. I rely on my husband for a lot of stuff. I rely on him to give me all the time in the world to get ready. I rely on him to accommodate for how I feel. I even rely on him (occasionally) to help me remember whether I’ve taken medicine that day. Because of my reliance on Joe, I have made it difficult on myself to venture out. I’ve isolated myself from a lot of my friends from my former life (ie. healthier days), because their normalcy was more than I could handle. In a sense, I disabled myself a little. Chronically ill friends, please try to maintain relationships outside your marriage. Spouses, partners, caretakers of the chronically ill, encourage ‘your sick person’ to venture outside of their comfort zone. Being sick is a lot to handle for both people in a relationship. You will need support. And not only support, you are going to need fully functioning social skills at some point, too.

Oh no, I just had a thought. Do you think my new friend will still want to be my new friend when she realizes I made a whole blog post about going to lunch? Just when I thought my social skills were recovering . . .

Peace, love, and health, friends.