An Open Letter To Those Who Didn't Know Any Better

I am a person living with invisible illness. Quite a few of them, in fact. While they may be invisible to you, for me, they are impossible to ignore.

"But you don't look sick." I have heard it more times than I can count. Try reading that phrase a few times in different tones of voice. I know that it is often intended as a compliment. Sometimes it is blurted out as an impulsive reaction of shock or disbelief when someone first learns of my health battles. Other times, it is said with a dismissive tone, intended to discredit the entirety of my experience as a person with severe chronic illness, simply because those illnesses are invisible...to you.

If I had to sum it up simply yet incompletely, having an invisible illness is quite the predicament; a very strange, isolating, and painful predicament. It is unique in the worst way. Painful in more ways than can be described in words.

I can't help but scream these words about life with chronic illness. I never wanted or imagined my life to be this way, but there is no escaping what became my reality nine years ago. I am so grateful to be able to see the possibilities and promises in spite of that reality. I feel compelled to help as many people as possible understand this journey in some way, and to help those who are experiencing something similar to feel less abandoned. I want my friends with invisible illness to know that beyond those who truly understand what it is like to walk in their shoes, there are countless other supporters who stand fervently by our sides. I can only hope that my shouting will in some way give a voice those who suffer in silence.

I am sure I will spend plenty of time on this blog trying to describe what my life is like with chronic illness. I hope to help shed some light and bring as much understanding as possible to this challenge that many feel they are facing alone. As if the physical pain isn't bad enough (not to mention the nausea, the medication side effects, the financial burden, and the psychological angst), the difficulty of having to explain yourself repeatedly, in the midst of your misery, knowing that someone does not understand or refuses to understand, can be even worse than the pain itself.

I am more than willing to share anything about my condition to anyone who would like to know. I am (obviously) very open about all of it. I want to know that I've done all that I possibly can to take responsibility in helping others understand what I am going through. Of course, I can't possibly explain the details to every person I come into contact with. There is also no guarantee that someone will truly listen, accept, and then act upon what I tell them. This means that I am left with a world who looks at me and sees a completely healthy young woman. Little do they know that my body is likely worse off than theirs, their mother's, or their grandmother's.

I have had many insensitive, hurtful, or insulting encounters over the years with strangers and even some friends who judged me based only on what their eyes could see. Living in a visually driven and dependent society is to my detriment. This visual way of thinking coupled with a lack of knowledge about chronic illness, particularly chronic illness in young people, makes it nearly impossible for anyone to understand this beast that has been a part of every moment of every day of my life for the past nine years.

Quite often, I have wished that I could say something to those who clearly didn't know any better. I look at it as a chance to educate them and to help bring a little more understanding into the world. Unfortunately, I know it would likely make the situation even more awkward.

I want to take the chance to write an open letter to some people whose comments/reactions are still haunting me, even months or years later. I wish I could say that these experiences are few and far between. I think you would be shocked to know how frequently they happen. Every time I leave my house, check my email/text/voicemail, meet new people, or go to a public place, I am fearful about what someone might say or think. The fear that I will be misunderstood. That my symptoms will be misinterpreted. That I won't be taken at my word for how I feel. That I will have to continue to wear the "I'm fine" facade because anything else is just too confusing, exhausting, or upsetting to those around me. It may sound silly or irrational, but I know that many of my invisible illness friends will tell you that they feel the same.

I hope the following letters will help shed some light:


To the two teenage girls making fun of me in Target,

You were standing only four feet away from me when you snickered loudly to one another and then held a hand up to your mouth, pretending to whisper in a classic mean-girl manner. While looking right at me, you said at an audible volume, "The back of her arms are all broken out! That's so disgusting. If I had acne arms, I would kill myself".

You couldn't have known that the rashes and blemishes were from a pain patch called Fentanyl, a heavy narcotic intended only for patients suffering from chronic, unbearable pain. Every three days, for five years, I changed that patch from one arm to the other. When heavy medication is soaking into your skin transdermally and you struggle to shower even two days a week because the hot water is nauseating, it hurts to lift your arms above your head, twisting to reach the soap can trigger a pain flare, and just the thought of a quick shower sounds exhausting, it makes it nearly impossible to keep my arms from breaking out. I promise you, this is the least of my worries and I don't think it should worry you, either.

To the gentleman at the hotel bar in Los Angeles,

While enjoying a little vacation at the Mondrian hotel to celebrate my boyfriend's graduation, we decided to head downstairs to the gorgeous lounge surrounding the pool. The view overlooking the city is to die for. I never go to clubs, bars, or lounges, so I thought this would be a perfect opportunity to get dressed up and enjoy a night out because I could conveniently be back in bed in 60 seconds if need be. We only stayed for about twenty minutes; the vibe was a bit stifling, I was in pain, and we decided we would rather go grab a milkshake and head back to the room. As we left, I asked you to take a quick photo of Aaron and I against the skyline. You laughed in my face and with an insulting tone said "Ha! How cute. You must be from out of town or something." I calmly explained that no, I was not from out of town (not that it should matter, anyway). You scoffed again and asked why I would want a picture taken.

You couldn't have known that only three months before, I had survived my twelfth surgery. I had spent years weighing the options and then spent the months leading up to it fearing that I would not make it out alive. This trip was also a celebration of life and this night out deserved to be documented. Not only that, but after being sick for so long and having so few "normal" experiences, it has become incredibly special for my parents to be able to see photos of their daughter out living her life; the same life that we have all fought and prayed for. I was offended by your comments that made me feel like I should be ashamed for wanting to document a joyous occasion, even after I explained it to you. I knew you didn't understand and your half-hearted attempts at sympathy coupled with your inability to drop the sarcasm only made it worse. I wish I could say that I brushed it off, but that one picture of our night will always remind me of the man behind the camera and so many others like you.


To the group of young adults standing on the curb in the Orange Circle,

I attempted to parallel park in the spot right in front of you. While I am normally quite an impressive parker, I tried over and over that day but just couldn't make it work. I could feel my cheeks burning as you pointed and laughed. Though I couldn't hear it, thank goodness, I could see your bodies shaking with laughter as you mimicked my inability to get my car into the spot.

You couldn't have known that at that moment my pancreas was causing an uncontrollable back spasm. I couldn't even look over my shoulder without yelping in pain like a wounded animal. Without being able to turn my head or body, parking became a challenge. I was on my way home from an exhausting day at school and needed to grab a bite to eat, knowing that I would have no energy to do so when I got back to the house. What should have been a quick trip to grab some dinner turned into a humiliating experience. The hot tears started streaming down my face just as I finally pulled into the space. By then, I couldn't bring myself to get out of the car. The embarrassment amped up my stress which then made my pain even more excruciating. All I wanted to do was go home, but the pain was too intense for me to drive. I sped away from the parking space and pulled over onto a little street before reaching the freeway. I sat there in the quiet and lonesome safety of my car, where I could cry my heart out and then try to shake off the emotional pain in hopes of calming the physical, at least enough to make it home.


To the waiter who muttered under his breath that he "hates girls who don't eat" when he cleared my unfinished plate,

We came to have a nice family dinner on a Friday evening. I smiled at you politely as I ordered my meal. When it arrived, part of my brain acknowledged how delicious it looked. The other part, however, felt an instantaneous urge to throw up. I'm used to this extreme nausea, so it rarely results in vomiting. I stomached a few bites, as I usually do, as not to offend the restaurant. Nothing was wrong with the meal. It was me, not you. But when you came to clear our table, I felt the disapproval as you looked at my plate, then at me, then back at the plate. You asked incredulously if I was finished. When I nodded, you took it quickly and whispered under your breath before you'd even left our table, "I hate girls who don't eat."

You couldn't have known how desperately I wanted to enjoy a good meal. That I hadn't been genuinely hungry or had a craving for anything in at least three weeks. My pain had been too bad to even think about food. Because in my life, food = pain. I can't put something into my mouth without my pancreas jumping into action. This process is the same for you, too. Unfortunately for me, when that happens, my body incurs even more pain due to my conditions. After so many years, I've gotten used to it. But I go through phases where I just can't bring myself to eat because of the genuine fear of the agony that will follow. Other times my nausea is so bad (which could come from a number of my illnesses or the medications that accompany them) that I can't even think about eating. The minute I get a craving for something, a sudden wave of nausea pushes that desire away. It's embarrassing to go out to eat with friends or family and to need to ask the waiter to take away or box up your meal before you've even touched it. It's even worse when I have to put a napkin over my plate and plug my nose while everyone else finishes. Sometimes, I just go take a seat in the car because I don't want to ruin the meal for everyone else. Curling up in the reclined front seat is more comfortable than most restaurant chairs anyway. I would never want to offend you, the chef, or the restaurant, nor be perceived as someone you hate. I did my best to have a normal dinner and I just couldn't do it. It doesn't hurt to mention that there are many reasons that people may not finish their meals, none of which necessitate criticism.


To the flight attendant who gave me grief for not checking my bag,

I was one of the final passengers to board the plane. I had a small suitcase that easily fit the carry-on luggage standards. I started to panic as I headed down the aisles, seeing that people had stuffed jackets, purses, and even multiple guitars into the overhead containers, filling them completely. As I reached the final rows, you looked at me disdainfully and snapped, "Miss! You're either going to have to check your bag or find a place for it right away." When I asked politely for your help and explained that I simply could not check my bag because of the necessities inside, you shouted back, "Well, you're holding up the entire flight now! We're going to be late because of you. You'll just have to figure it out. It's not my problem that you have things you need in there. You should've had an earlier boarding spot, then." The entire back of the plane was now staring at me or burying their heads at my embarrassment. I looked around desperately for a place to squeeze my bag. I asked a gentleman if I could move his briefcase over to the next container and then refolded a jacket which allowed my bag to fit perfectly while you stood and stared.

You couldn't have known that I had two large Ziploc bags full of medications that I require every single day to help with pain, nausea, digestion, anxiety, headaches, sleep, and balance. Not to mention the bag of extra pills that I need under special circumstances. My carry-on also had two weeks' worth of pill cases that hold my morning and night meds. Three weeks of thirty or forty pills per day takes up a lot of space and I absolutely cannot risk losing them. My bag also holds my heating pad, which I take out while waiting for my flights as a comfort measure. There are also two sweaters in my bag that I use to shove behind my back or around my neck to do all that I can to prevent the imminent and unavoidable extra pain from sitting on an airplane in one position for six hours. You couldn't have known that I was on a scary flight nine years ago, one month before I got sick. Many people with chronic illness develop a range of anxiety and/or depression. One of the serious anxieties I acquired was a fear of flying. My bag has my bible, my iPod with calming music and meditation tracks, books for distraction, and a journal to write/sketch in when I get scared (and let's not forget the anti-freakout pills). I would have loved an earlier boarding position, but when it came time for my online check-in to secure my spot yesterday morning, I was curled up in fetal position due to the incredible pain brought on by the physical exertion of packing, the overwhelming anxiety of flying the next day, and the stress of worrying that I won't feel well on my trip and will be letting people down. I can only imagine the strain of working in the travel industry, which is why I make every effort to have a positive encounter with each worker I see while traveling. I refuse to be a grumpy traveller. At that moment though, I became a wounded traveller. I was not only hurting physically, but emotionally. I took my seat, covered in unnecessary embarrassment and frustration.




These snapshots only convey a small account of the shame, hurt, embarrassment, frustration, and isolation I've experienced. I can't blame people for not knowing any better. I've always tried to come from a place of understanding their misunderstanding, but it does little to ease the hurt. It's nearly impossible to tell that I am sick just by looking at me. But I believe that many of these encounters are not entirely a product of being uneducated about chronic illness. I think that many of them could have been avoided with a healthy dose of respect, kindness, and patience, which seems to be all too absent nowadays. Situations that might fluster or frustrate anyone are only made more difficult by having chronic illness.


In honor of Invisible Illness Awareness Week, I'll add a bit more. A visual aid, if you will.

When you look at me and think that I am okay, this is what you see:

What a put together young lady!
(...or something like that)

When you ask me how I am and I say "I'm fine", this is what you picture:

Happy happy happy!

Possibly even this:

I don't know. Maybe it's just me who likes to picture myself with ice cream.

But when I look at me, this is what I see.

The dark circles under my eyes never go away.
Chronic illness does not allow for good sleep. I haven't slept through the night in nine years.
I nap constantly because I need it...
but no matter how hard my body tries to restore itself with sleep, it can never keep up.

 My face swells and sags when I'm in misery.
I try to avoid mirrors when things are this bad.
It is startling to see yourself marred by such pain.

After so many years, I don't even notice the scars from the twelve surgeries.
But I feel them, I feel what they stand for, and I feel the pain and illnesses that made them necessary.

This is what I feel like when I say that I am fine.

Pain, pain, and more pain. It never goes away.
If I'm ever zoned out or seem a little off, picture this.
It might put the pieces together a bit more clearly.

Though startling, this is my normal.
What would cause many to call an ambulance, I have become used to.
I do my best to hide this side from anyone which has become easier over the years.
With the hope that it will aid understanding, I feel it's important that it be seen.

Sometimes our illnesses are only invisible because we choose to make them that way. We do it for you as much as we do it for ourselves. I think we can all look at the above photos and agree that something is wrong. That there is genuine pain and that there is something serious causing that pain. But my guess is that looking at them makes you uncomfortable. It makes me uncomfortable, too. For our own sanity and well-being, and for the comfort of others, many of us hide any outward signs of illness. It's a survival instinct. A fake it 'til you make it kind of thing.

I encourage all of my friends with invisible illness to be as open as possible about what you are going through. I know how hard it is to feel like no one will understand. I know the fear of feeling like it will be used against you or that it will be thrown back in your face. But I can guarantee you one thing: if you never tell someone what it is like, there is no way that they can possibly understand.

Yes, there will be those that don't get it. People will disappoint you and hurt you. It will be unbearable when it is a friend or loved one. You may do all that you can but it will not be enough. Do not let the negative experiences keep you from trying. I am willing to bet that there will be people who surprise you in the best way. It is so refreshing and so beautiful when it happens. Many people want to know what you're going through, but may be afraid to ask. Let their curiosity lend you a helping hand; it is their yearning to connect with and understand other human experience. Do your best to candidly explain what your life is like, how your pain feels, what your needs are. And then remind them that you are human. That your desires are the same as theirs. That you really are doing your best and that it may be quite different from what their best is. That you still go through all the same highs and lows as they do. That you were as "normal" as they were before you got sick and that you are doing what you can to live your new "normal".

Here is one last thing I want us all to see.

I can be hurt six ways to Sunday. It comes from my own body, from strangers, and from those who know me well. But I am alive and I am happy. I am living a different journey, but it is mine and it is beautifully, painfully wonderful. I will not let me joy be invisible. I will not let my gratitude, my purpose, or my will to live be invisible. 

I will not be crushed by those who did not know any better. I will do all that I can to help all of those that cross my path become the ones who do know better and will make this same promise to myself. It breaks my heart to know that I have ever been a source of judgement or pain in someone else's life. It is not our right to make anyone's journey more difficult, chronic illness or not.  We all do it, probably many more times than we care to acknowledge. A face that we make, an unkind tone of voice, an uncalled for judgement whether said aloud or in our head...it happens daily. But we can change that. We can do better next time. We can choose to pursue a life of visible respect, compassion, empathy, and kindness.


I'm in. Are you?





"A good man out of the good treasure of his heart brings forth good; and an evil man out of the evil treasure of his heart brings forth evil. For out of the abundance of the heart his mouth speaks" - Luke 6:45