Category Archives: Chronic Illness

When People Say, “You Don’t Look Sick.”

Every person living with a seemingly invisible illness has lived this scenario. Maybe you’re speaking to a distant family member when it happens. Perhaps you run into a former classmate or friend from work. It could be the sweet lady who sits in front of you in church. Regardless, we’ve all been in those situations where someone says, “You don’t look sick.” It’s a double-edged sword of sorts. On the one hand, this person thinks they’re paying you a compliment. On the other, it only adds to the invalidation we often feel. So, let me make it clear to all those who aren’t living with chronic illness. I think I can safely speak on behalf of all those with invisible illnesses when I say- Please, for the love of all that is good and kind and understanding in this world, stop saying we don’t look sick. It just isn’t conveying the nicety that you’re trying to insinuate.

For instance, if I “look healthy,” there’s been some serious effort that has gone into that façade. I begin preparing to go into public hours before I go. I know there will be people who try to diagnose my current situation based on how I look that day. I save myself effort and aggravation if I try to look like everyone else. This has nothing to do with make up or wardrobe choice- it has everything to do with waking up in time for my medicine to start working before I go in public. It is about me achieving a manageable blood pressure and often using enough heat or ice to make my joints feel functional.

Let me try to explain. I look mostly healthy. Don’t get me wrong- I’m exceedingly aware of all the ways illness keeps me from measuring up to society’s standard of health. However, I look like every other thirty something for the most part. This means when I see doctors I often feel like I don’t meet the bar for what is “sick enough” for them. I typically feel that my smile or laugh or even pleasant disposition (let’s be honest, that comes and goes) inhibits me from getting the care I need. Quality of life is not easily quantified, so I often feel like it is being determined at face value rather than by my actual experience. It’s frustrating. So, when you tell me I “don’t look sick” you’re listing another problem that keeps me from receiving care- rather than giving me a compliment. I completely understand that isn’t your goal; however, I would be lying if I pretended that I perceive that phrase as some sort of compliment.

If I dig into that phrase a little deeper, I’m able to understand why it strikes me as hurtful so quickly. When we say that someone does not look sick, we are essentially telling that person he/she has no obvious disability. This means as my illness progresses, and I inevitably begin using a walker or wheelchair, I will start meeting society’s standard of looking sick. I won’t necessarily be any sicker than I am right now. However, as my mobility changes, I will meet the definition others expect me to fit to be “sick enough.”

Please, understand that I am not one to nitpick over semantics. If you say something to me with the best of intentions, I will do my best to perceive it as you intended. I am not trying to make anyone hyper-aware of their language. However, in this world where I believe all decent people are called to learn how to constantly be better and to make their language as inoffensive as possible, I want to challenge you to say something different. In all reality, it’s not necessary to comment on how anyone looks anyway. Try asking someone how things are going- and genuinely wait for a response. Maybe tell someone that you are glad to see them- rather than invalidating their illness, you are letting that person know you value your time with them. I feel like all of us are above commenting on someone’s physical appearance.

Oh yeah, and if you make a mistake and accidentally tell someone they “don’t look sick,” no worries. All you must do is add some empathy. Follow up with “but I understand that you really don’t feel well.” See? That’s all it takes. I promise- I will always appreciate your empathy and understanding.

Peace, love, and health, friends.


Self-Care Matters.

Hey, you guys! (Goonies reference- 5 points if you caught it) I’m currently blogging from my car- while parked at Sonic. I’m making a valiant effort not to order tater tots. My theory is if I order a really large drink (it’s roughly the length of my torso) they won’t judge me if I sit in their parking lot and work on blog stuff.

I hope all of you had a wonderful holiday season- I hope your Christmas was merry, your Hanukkah happy, and your New Year sparkly and bright. I’m essentially just coming to the surface after a post holiday health meltdown which included bronchitis, Flu A, and sinus/ ear infection. Y’all, this mess started the day after Christmas, and I finished my last antibiotic LAST NIGHT. So, yeah, February 1 feels like my New Year. January was the month of feeling like I’d been banished to Illness Island (which is neither exotic nor tropical).

So, since I’m experiencing a very belated New Year, I thought it might be a nice time to talk about resolutions. My resolution comes with a bit of a back story, and so bear with my digression.

I entered into 2018 feeling very “meh.” I wasn’t especially excited about anything. (Granted, I had the flu on Jan 1, so life wasn’t exactly full of adventure.) I didn’t have writing goals or advocacy goals. I didn’t even have personal goals. (Don’t get me wrong- I’ve had the goal of losing a few pounds for the last 15 years, but at this point it goes without saying- or, you know, actual effort.) Medical/ Health things that I had high hopes for didn’t work out- and brought the possibility of scary new diagnoses. I didn’t feel like I was coping as well as normal. I mean, normally, I eat junk and watch trash tv for a day, and after a day of wallowing I have an action plan. However, I couldn’t get there. I couldn’t set goals. To be honest, I was so devoid of my normal “Tiffany-sparkle” that I began to feel like a fraud for ever believing I was that person.

But with time and a lot of buffalo chicken wings (weird fact: since the flu, I don’t like chocolate, and I crave hot sauce!), I started to notice a recent pattern. Throughout the previous months, I had let a lot of little habits slide. You see, I felt tired, overwhelmed by Christmas craziness, and a little overextended. Instead of countering that by stepping back and not trying to do everything- I responded by giving up things that I enjoy.

Now, I’m not suggesting that we should always put pedicures and facials ahead of responsibilities, but I am suggesting that self-care is important. You see, I continued to meet the obligations I had to others, but I stopped everything else. I said I was too tired for the gym. I justified not writing by saying my brain was too foggy. I told myself that I hadn’t fixed my hair is weeks, because my shoulders hurt. All my excuses were true. However, at the heart of them, the truth was that I had stopped making time for myself.

I’m not proud of it- nor am I trying to be some tragic martyr. My failure had nothing to do with others’ demands of me- and everything to do with how I responded to them. I am still making an effort to help others- my resolution of self- care was never about selfishness. However, I’ve resolved to find time for myself every day. Personally, I’ve said that time can’t be used for napping, because I don’t necessarily find that restorative. I’m practicing Spanish daily (with very limited success thus far), fixing my hair occasionally, and today I began making time to write.

Being sick is a daily battle for so many of us. And, regardless, everyone has their own set of struggles. I want to encourage you to make some time for yourself. Learn a language; read a book; do something that takes your focus off the struggle for a few minutes.

Peace, love, and health.

Diagnosis: Christmas Brain

Y’all, it’s hit. I officially have a full-blown case of Christmas brain over here, and it’s not pretty. I’ll be honest, I’m making Clark Griswald look like a laid back guy in comparison. Here’s the thing- I thought I was prepared for Christmas. Two and half weeks ago, I would have told you I was right on pace to have everything finished early. Nope. Just nope.
In case you’re wondering what on earth “Christmas Brain” is, you’re friendly, neighborhood health blogger is here to give you a full symptom list. Please be aware that symptoms exist on a spectrum, and you may feel these symptoms to a greater or lesser degree than others with Christmas Brain. Also, I’m fairly certain that “Christmas Brain” can be experienced by a wide range of people- not limited to those who celebrate Christmas (See also, Hanukah Brain, Kwanzaa Brain, etc.).

Those presenting with Famnesia are likely to completely forget the friends and family closest to them regarding gift exchange. For example, one sufferer of “famnesia” has been known to wake up one morning and suddenly realize she’s married and her husband probably expects a Christmas gift. Famnesia may occur regarding one, several, or all friends and family. Sufferers typically have bouts of regaining memory- when their friends/family show up with a gift.

Others with Christmas brain may notice pain or discomfort in their “buying finger”- or the finger(s) used to click “Add to cart” on Amazon Prime. Click-itis often resolves when the sufferer finishes their holiday shopping; however, it is likely to resume when cases of Famnesia result in last minute gift giving needs.

Lack of Flying Candy Canes
Now, this particular symptom is often described using other (perhaps more colorful) wording. However, some sufferers have been known to say, “I do not give one Flying Candy Cane whether these gifts have bows on them or not.” When there is an overall lack of Flying Candy Canes, one may find themselves wearing yesterday’s socks, using an obscene amount of dry shampoo, and feeding one’s family from Papa John’s. (Because, at this point I don’t give one Flying Candy Cane about proper nutrition.)

Sugar/ Caffeine Cravings
Many sufferers of Christmas Brain notice they’re existing on little more than Christmas cookies and coffee (with frosted sugar cookie flavored creamer). When other symptoms hit their peak, sufferers will often self-medicate with more coffee, Christmas treats, and the occasional 5 gallon drum of popcorn. While these cravings offer little sustenance to help alleviate symptoms, sufferers are often incapable of and/ or unwilling to do anything other than indulge these cravings.

Impossible Expectations
Sufferers will often imagine themselves making homemade Christmas candy, assembling a 3-story gingerbread house, caroling with the neighborhood children, ending world hunger, and achieving world peace (and a puppy for everyone). These are illusions. The sufferer will do none of these things. He/she may babble incoherently for days regarding accomplishing these tasks. Caregivers should be aware that while the Christmas Brain sufferer is making plans to do these things, he/she will not make it around to them. Do not buy ingredients, scarves, or puppies in preparation.

This (quite tongue-in-cheek) list is not exhaustive, but it certainly covers a number of the symptoms felt by this exhausted elf. I love Christmas, and I am looking forward to spending time with the people I love most in this world. I also know (beyond a shadow of a doubt) that none of them expect the level of perfection that I tend to put on myself. However, the Christmas Brain struggle is real, and I’m secretly looking forward to December 26- the magical day when everything is half price, and I’m way too tired of shopping to care.

Merry Christmas, Happy Holidays, and Happy New Year, you Cotton-headed Ninny Muggins!

May our symptoms resolve by 2018.

Peace, love, and health.


Book Talks, WEGO, and Weekends- Oh My!

Good googly moogly, friends! This week has felt especially crazy. It wasn’t terribly busy by normal people’s standards, but for a sick chick it wa downright exhausting. 

The Book Talk

My local library invited me to talk a little about the book Joe and I wrote. It was such a fun experience. I realized that I’m a nervous wreck when I talk around new people now, but I also realized I can stay conscious in spite of prolonged tachycardia. That seems like a win. Most importantly, I met several new friends who plan to return for the chronic illness support group I’m leading at the library. I look forward to hearing their story and helping to encourage them along this crazy, chronic journey. 

WEGO Health Awards 

I found out a couple weeks ago that this blog was named a finalist for WEGO Health’s Best in Show: Blog award. I’m still so very overwhelmed and grateful that my blog was chosen. The award announcement was Wednesday, and we didn’t win- which is perfectly fine. I mean, of course I would have been thrilled if my blog was chosen as a winner. But, if you saw the other blogs I was up against, you would understand why I wasn’t devastated to lose. It was seriously an honor to have made it to the top 5.  Plus, I got this snazzy purple T-shirt, and I love a good shirt. 


And, now my friends, I’m headed to Knoxville for more football time with my main guy. (I’m actually blogging on my phone while Joe drives.) I’m very much aware that my everything hurts (yes, all the parts- they hurt), and a full day of bleacher sitting is not going to help this situation. However, I’m equally aware that I love going places with Joe, and I don’t want to miss a single adventure. I’ll be honest- in my life, sometimes the bravest thing I do is going on an adventure when I’m not sure if I’m up to it. (It’s a measured risk, though. Joe has missed games before when I just wasn’t up to actually going.) 

Friends, I hope your weekend is great and filled with as much rest of adventure as you want. 

(Thanks for enduring my test run of blogging from my phone. 😬)

Peace, love, and health. 



I’m really tired. I’m always tired- this is hardly a revelation. But, if I’m being entirely honest, I have the absolute worst sleep habits ever. I don’t apologize for my strange relationship with sleep, though, because I have done everything within my power to help the situation- to absolutely no avail.
Here’s where I get around to making a point. Please, (please, please, pretty please, with melty cheese on top) do not cast judgment on the sleep patterns of those with chronic pain. Occasionally, I hear my chronic illness/ pain friends commenting about how their family/ friends have told them they would feel better if they would sleep on a normal schedule. While I agree that would be super fabulous- are you actually kidding me? Do you truly believe anyone chooses to stay up all hours of the night? Of course not. When you don’t/ can’t sleep your mind becomes victim to all the “what ifs” of your condition, relationship, and general life. Who would choose to do that? No one.
Now, don’t get me wrong. I don’t think chronic pain patients are the only people who can’t sleep. I know mental illness and hormonal changes affect sleep patterns. I’ve heard that my parents of newborn friends are rather sleep deprived as well. Joe has sleep apnea, and sleeps with a CPAP. It’s a sleep disorder. That’s another legitimate concern. I’m truly not trying to act like I’m the only person with a sleep concern up in here. (Although, Joe sleeps like a sweet angel baby once he dons that CPAP mask- as if there’s never been a sin to enter his blessed life, and I’m a little jealous.) I’m sorry. I really am. I feel your struggle, and I’m not trying to detract from it.
But, seriously. To all the people who feel I- or my other chronic illness/ pain friends- should just go to bed at a reasonable hour, please keep this in mind:
When I go to bed at night, I am quite literally putting myself into a device of serious discomfort. If I lie on my left side, I have to worry about my left shoulder dislocating. More specifically, I know my left shoulder will dislocate if I don’t move to another position quickly enough. If I lie on my right side, I’m lying on the hip that dislocates. Even if it doesn’t dislocate- it hurts. It really hurts. If I lie on my back, I lose feeling in my arms and legs- which makes my 37 nightly restroom trips almost impossible. (Seriously, you try walking on numb legs.) I don’t even try lying on my stomach, because my back spasms to the point that I literally can’t move to sit up. (Again, seriously inconvenient for the whole 37 restroom trips situation.)
I am a human rotisserie. I spend my nights spinning in place- hoping I will find a place that is comfortable enough to doze.
So, please. If you have opinions about what time sick people should go to sleep, keep them to yourself. It’s not easy. I assure you- we have tried every supplement, sleep aid, magic ointment, and tea. We are trying. We are combating pain, adrenaline surges, and the general fear of the unknown. It’s not easy, and I assure you- your advice about going to bed at 9 or turning off devices at 6 do little, if anything, to help. Please, give us some grace to figure all this out. It isn’t easy to live like this during the waking hours, and it when it’s dark, it gets even harder.
Chronic illness/ pain friends, please keep in mind that not everyone keeps our strange hours. I’ve found solace in online support groups during the wee hours of the morning when it’s impossible for my husband to be awake. I’ve had to learn that it’s okay if Joe is resting well during the hours that I’m trying (without success) to sleep. Joe has had to learn that it’s okay to let me sleep well past the hour that functional adults typically sleep. If you are living in a relationship that is juggling chronic illness/ pain, you have to learn to be patient while the other one sleeps. There are typically 6-8 hours of the day that one of us is awake and the other is not- just because our bodies run on opposite schedules. We are often quirky ships in the night. That is not only okay- it’s part of the balance of this life.
While we’re being very honest here, I’d like to also mention that my dog wakes me up for a drink of water (in which she must actually be walked to her bowl because she’s scared of the dark) at least three times a night, and Joe is a blanket hog. Those are very real situations in which the advice of healthy people is always appreciated. I’m considering making both of them sleep in the bath tub.
Peace, love, and health, friends.


What on earth am I supposed to eat?

Around Christmas last year, I realized a painful truth- I had fallen victim to leggings. How does one become victimized by leggings, you ask? I put on jeans and realized that without the comfortable stretch of elastic, I could no longer get into my normal size. Given that I truly hate shopping for jeans, I decided I would lose weight rather than buy more.
So, I began researching diet plans. I’m sure some of you are thinking, “Why don’t you cut back on junk food and start working out?” Well, it’s a little more difficult. First, my exercise possibilities are seriously limited by joint dislocations. Also, I needed a diet plan that allowed me to eat the sodium I need to maintain a sensible blood pressure. So, after a lot of research (and by research, I mean I consulted Dr. Google- not an actual nutritionist), I decided to try the low carb diet. It was great. I ate eggs and butter and bacon, and I still lost weight! My jeans fit. My husband was thrilled that we were eating meat and eggs for almost every meal. It was a beautiful thing.
Then, at the end of February, I had labs drawn and realized my cholesterol had almost tripled from December until then. After a fairly one-sided discussion with my cardiologist (where he reminded me that EDS and POTS are not exactly compatible with strokes and heart attacks), I started cholesterol medicine and committed to no longer eating meat.
Poor Joe. He went from eating meat at every meal to trying soy hot dogs (which he actually prefers over “real” hot dogs) and lentil shepherd’s pie. One week I was preaching about how our bodies need animal fat- the next week, I was telling him how pigs are slaughtered. This poor man has been the real victim in my dietary indecision.
Here’s what I’ve learned- everyone seems to have strong feelings about how we’re supposed to eat, but I’m not sure anyone actually knows what they’re doing. A few days ago, I posted in an EDS forum asking for advice for recent digestive issues. First, let me say that I was thrilled with the number of responses I received. Everyone was so kind and genuinely trying to be helpful based on their personal experience. However, I couldn’t help but laugh at the range of answers I received. Go vegan. Eat meat. Eat more bananas. OMG, don’t you dare eat bananas. Potatoes are evil. Eat all the potatoes. Eat some yogurt. Dairy will kill you. Eat low carb/ high fat. Eat high carb/ low fat. Then they started using words and non-words like “histamine, alkaline, and FODMAPS.” What in the world? Is everyone as confused as I am?
Remember a few years ago when we were convinced that everyone should be gluten free? I tried that for 5 months with very little success. But, at least that sort of made sense. Now, I’m clueless. Twenty-five years ago, I had to drink milk every day. I think there was some part of Parenting 101 in the 80s that said children had to drink milk or you had failed. Now? Milk is frowned upon. Get your milk from an almond or a coconut, people. But, as with all things nutrition, I can’t actually tell you why you shouldn’t drink milk/ eat dairy. It’s just a thing we’re saying.
I say all this silliness to make this point; no one has all the answers. There are those who will blame your illness, symptoms, mood, or hair color on poor eating choices. But, in fairness, I doubt that any two of those “food blamers” would actually agree about what is/ isn’t healthy. I’m trying to fuel my body the best I can. My jeans currently fit. (Okay, I’ll try them on again at Christmas to check.) I don’t eat meat- even though I just made a pot roast that smells delicious. The only thing that I can eat without getting nauseous right now is a baked potato. I eat too much cheese- even though it makes me feel awful. (But, seriously, y’all- cheese is delicious and worth the sacrifice.) I’m headed into football season, and I know that game day food options for a vegetarian will consist mostly of French fries. We’re doing our best- even when the “best practices” for healthy eating seem to be changing daily.
Peace, love, (organic bananas) and health, friends.

This one’s for the teachers who can no longer teach . . .

Back to school time is one of my favorite times of year. I love buying crayons and pencils far more cheaply than any other time. I enjoy the enthusiasm of a second-grade girl picking out the perfect backpack. (In my day, kid, we had Lisa Frank Trapper Keepers, and they were the I appreciate a clean classroom that shows the tireless efforts of the janitorial staff to prepare the building for young learners. And, I’m borderline obsessed with classroom decorations. (Seriously, parents. If your child has a teacher that has decorated every inch of his/her room, please comment to the teacher on how amazing your child’s learning environment looks. Those decorations are time consuming and EXPENSIVE- and more than likely came out of the teacher’s personal funds.) I have loved this time of year since I was old enough to join my older brother for back to school shopping when we were kids.
Now, though, it’s different. I still love the energy and hopefulness of both teachers and students at the beginning of the year. I still enjoy hearing about first days of school. I’m thrilled that my social media is filled with teacher friends’ pictures of their classroom for this year or parents’ pictures of their little ones headed off for the first day. I even look forward to taking a super obnoxious “First Day of School” picture of my own absent-minded professor (and husband) when he heads back to the classroom. There are aspects of this time of year that make me smile, but the fact remains that this time of year hurts.
I am a teacher- or I was, at least. Mentally, my calendar still runs August to May rather than January to December. I still have nightmares where I’ve missed the first day of school or I have a class of 40 students who won’t listen to anything I say. But, if I’m being honest, I’m also haunted by a dream where I go back to work, and I’m a teacher again. In the dream I keep saying, “I never thought I’d be well enough to do this again.” Then, I wake up, and my shoulder is dislocated and my heart is racing, and I realize I’m still in the same body that disabled me more than four years ago when I taught my last class.
I’m not complaining, really. I’m certainly not trying to put a damper on anyone’s back to school enthusiasm. I’m simply saying to all those who feel especially vulnerable at back to school time, I feel you. I feel your tears. I feel your mourning of unrealized future plans and dreams. Most of all, I get it. I understand how it feels to simultaneously be grateful that you’re able to stay home and focus on your health- all while being enraged that your body has demanded that of you. I understand how it feels to want to hide from your former colleagues because of the shame of “not being able to hack it”- all while hoping they’ll tell you about their classroom experiences so you can live vicariously for a moment. I understand what it means to hurt this time of year- even though it’s one of your favorite times of year.
I don’t have advice on how to handle this hurt, because I’m in the middle of it. I know that it gets better with time- I haven’t openly wept in the back-to-school section of Wal-Mart this year, so that’s progress. I don’t know when or how broken hearts heal. I imagine this will always hurt a little- especially at this time of year. So, while I continue to try ‘to bloom where I’m planted,’ I’ll be the first to admit that where I’m currently planted hurts, but I’m not the only person living that reality. So, former teachers, school employees, and students who can’t return to class for whatever reason this year, I feel your pain, and I’m here. Maybe if we keep our heads down and watch a lot of movies on Lifetime, August will pass quickly and painlessly.
By the way, my absent-minded professor has requested to wear a Spiderman costume for his first day of classes, because he saw it in a Wal-Mart back-to-school commercial. (Goodness, this guy . . .)
Peace, love, and health.