So. The bridesmaid in this photo. If you didn’t know who she was, what would you think? Elegant dress? Rockstar ponytail? She has a pretty spiffy-looking family, huh? *wink wink*
Based on this photograph, you probably would never come to the conclusion that she was living with several chronic illnesses. But of course, you know who that bridesmaid is — None other than me, Sarah Kate.
What you can’t see in this photo, however, is the central venous catheter tunneled in my chest, disguised beneath my Sabrina-Fairchild-inspired dress which was carefully designed precisely for that purpose. My unnatural-looking, permanently hyperextended arm is strategically positioned in a pose I consciously mastered in an effort to diminish the appearance of my disability as much as I could. If not for my hand-painted prosthetic contact lenses, my extreme light sensitivity would have demanded I wear a pair of unsightly dark blue sunglasses. And those earrings? They weren’t really earrings at all. I simply glued pearls to my ears, as my multiple attempts at ear piercings never healed due to a connective tissue disorder.
Most of the year preceding my big sister’s wedding was spent stranded in out-of-town hospitals and Ronald McDonald Houses because I was too unstable to return home. And a short three weeks later I was once again in the hospital fighting a fierce battle for my life, cinching an affirmative diagnosis of Hemophagocytic Lymphohistiocytosis (HLH). There were so many uncertainties regarding my health leading up to the grand celebration. Believe me, when that glorious day finally arrived, my ability to be my sister’s maid of honor was an incredible blessing from God that none of us took for granted.
What I am trying to say is that a person can be very sick, even if their appearance does not reveal that reality.
National Chronic Invisible Illness Awareness Week was observed earlier this month. Over the years my illness has become more obvious to a casual observer, but from the early days of my chronic battle I poignantly remember the challenges posed by the mere fact that my illness was largely invisible. And because of those painful memories, I feel compelled to speak up for myself, for my friends, and for the many silent sufferers of invisible illness.
My very first diagnosis in my journey was Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), a chronic neurological pain condition. At age 13 I still looked like the same happy, peppy, sassy Sarah Kate in my darling little Abercrombie skirt; but on the inside, I was fighting to deal with this new sensation of an ever-present burning flame that threatened to bring me to tears if only I would give into it.
On a social level it was difficult for my schoolmates to grasp why I was rarely present for morning classes. I imagine some kids must have thought me a slacker, when in reality the harsh medications I required at the time came with a side effect of brutal insomnia, and my only chance at getting some rest was to catch a few winks in the morning hours when complete exhaustion would finally wipe me out entirely. My friends couldn’t realize that the all-too-often occurrence of my canceling plans due to pain frustrated me even more than it did them. Oh, and I’ll never forget my days of using a portable TENS unit as a therapeutic attempt at relieving my ankle pain. My mom shared a very, er, “helpful” suggestion of my carrying the TENS unit in a fanny pack. Just the mention of the word “fanny pack”, however, brought about some petty, angsty, teenager-typical retort, as I was convinced that this fashion faux pas was nothing less than “social suicide”. Perhaps a fanny pack may be a practical accessory for Barney-lovers and soccer moms, but it would most certainly clash with my aforementioned oh-so-fashionable Abercrombie skirt! Puh-lease, Mom. *scoffs* Imagine my surprise when I recently discovered that Victoria’s Secret is now selling fanny packs. 90s retro chic? Go figure! Maybe Mom was on to something?
The challenges I faced socially paled in comparison to the cruelty that I had to deal with in certain doctors’ offices. Soon after my RSD diagnosis I began experiencing intense and inexplicable abdominal pain. There’s an unfair stigma automatically pinned upon a young, skinny ballerina who has trouble eating. To my dismay some doctors made the unfounded and ignorant assumption that my stomach pain wasn’t real. It was a harsh sting to be accused of lying for the first time in my life when what I desperately needed instead was proper diagnostic testing and appropriate treatment for a very serious physical illness that could put my life at risk. Finally after five years of enduring such rubbish I stumbled across the word “gastroparesis”, thanks to a little thing you may have heard of called “Google”. Shouldn’t a doctor have mentioned that possibility? What’s up with that, Doc?! So I took a cross-country trip to see a gastric motility expert, underwent the specialized testing, and what d’ya know, I have markedly severe digestive tract paralysis.
The moral of this story: Just because something is invisible doesn’t mean it isn’t real.
Can you believe that about 1 person out of 10 lives with an invisible illness? It’s a fact! This is why it is important for all of us to be aware. Here is a brief run-through of what you should know…
For Family and Friends of Patients with Invisible Illness…
What Is An Invisible Illness? — This term refers to a wide spectrum of illnesses and disabilities, some rare and some not-so-rare, that are not immediately apparent. Some examples include:
- Chronic pain — RSD/CRPS, Fibromyalgia, Myofascial Pain Syndrome, etc.
- Ehlers-Danlos
- Digestive Tract Paralysis — Gastroparesis, Chronic Intestinal Pseudo Obstruction, achalasia, etc.
- Other Gastrointestinal Disorders — Chron’s, Celiac, ulcerative colitis, IBD, etc.
- Mitochondrial disease
- Dysautonomia
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Migraines
- Mastocytosis and Mast Cell Activation Disorder
- Endometriosis
- Chiari
- Sjogren’s
- Lupus
- Diabetes
- Epilepsy
- Multiple Sclerosis
- Heart disease
- Chronic Fatigue Syndrome
- Arthritis
- Lyme Disease and other tick-borne infections
- Autism
- Depression
- Sometimes even illnesses like cancer and Hemophagocytic Lymphohistiocytosis (HLH) can be invisible!
So basically, invisible illnesses are everywhere! It’s kind of a really big deal.
We May Be Smiling, But That Doesn’t Mean We Are Okay. — When living with chronic illness, after a while we actually grow accustomed to feeling sick; that doesn’t make it any easier, though. But yes, we will keep smiling. And yes, that is genuine happiness! But while we appreciate the kind sentiment at heart when someone says, “You look so good!”, at the same time, statements such as that can, in a way, feel somewhat disheartening. Now of course I realize that such a phrase is in no way intrinsically offensive; no matter how you twist it, it is indeed a compliment! But it is refreshing when someone recognizes the perseverance it takes for us to look so good on the outside when we feel so very crummy on the inside. So let’s add a little caveat to that phrase: “You look so good! I admire your determination to overcome your pain with a smile.” Now that is an encouraging compliment for someone battling chronic illness.
Please Be Patient. — Oftentimes we have trouble controlling our schedules. Understand that sometimes it can take a week’s worth of our energy to accomplish a single day’s activities! Overdoing it can really set us back, so we have to learn to channel our energy to be as productive as possible. I mean, I began writing this post for Invisible Illness Week LAST year… And I still didn’t meet the cutoff for awareness week THIS year! This is coming from the girl who cried the one time her daddy didn’t get her to dance class on time. But whatcha gonna do? I’ve had to learn to respect my body’s unacceptable time etiquette and just roll with it. And knowing how unacceptable my time etiquette may be, I thank you most kindly for accepting me anyhow!
Ask Questions! — If someone has opened up to you and told you that they have an invisible illness, go ahead and ask questions. Okay, yeah, sometimes people prefer not to talk about their struggles; but most of us truly appreciate when people take the time to show they care! Our illness is not our identity, but be prepared… You would be surprised how all-encompassing chronic illness can be. Sometimes that impact can be unbelievably harsh, seeming almost too terrible to be true. Oh look at that, the perfect segue into my next point…
BELIEVE US! — There are three simple words that every invisible illness sufferer needs to hear sometimes: “I believe you”. We often endure a lot of disbelief regarding our various conditions. I understand that the mere concept of invisible illness can seem somewhat bizarre. But nevertheless, these illnesses are very real. Sometimes the best thing you can do to support a loved one facing these challenges is to simply believe them.
Don’t Forget Us… We Are Not Invisible! — One of the most painful aspects of invisible illness is the profound isolation that can come along with it. So often friends drift out of our lives never to return. What you may not realize is that while you are able to move on with your life, your sick friend is likely still at home without that same opportunity to “move on”. This is how invisible illness can tragically translate into invisible people. But while this is indeed one of the most painful aspects of invisible illness, it has led to an undeniably beautiful blessing for me as well… Pictured below are a few of my very best friends, all of whom I have met online because our similarly challenging journeys have intertwined. Each of these young ladies has earned my greatest admiration. I dearly love them as sisters. Don’t let invisible illness keep you from knowing such loveliness. If you know of someone who is isolated or struggling, make an effort to reach out to them… Please don’t make them feel invisible. And in turn you will likely be blessed with a truly special friendship.
For Invisible Illness Patients…
You Are Not Invisible And You Are Not Alone! — Hey you! Yeah, you! I see you! And I really want to give you a hug! I realize sometimes battling an invisible illness can feel so very lonely. But I am here to tell you that there are many other people facing similar hardships. And just knowing that you don’t have to fight this battle alone can be an immense comfort. So let’s be friends, okay?
Don’t Hate… Educate! — It can be terribly hurtful when family and friends do not believe the struggles you endure. But as maddening as the situation may be, we must be careful to remember that our illnesses can indeed be difficult to understand. Sadly some people cannot believe what they cannot explain. Rather than lash out in anger, do your best to educate the skeptics. Not that you have anything to prove… They should believe you, no questions asked. But if they are willing to learn, it may spare you from more disparaging remarks in the future.
Pray For Better Days Ahead… But Until Then, Embrace Your Unique Journey. — If you have a chronic illness, it’s a pretty safe assumption that life hasn’t gone exactly as you planned. But God’s plan for your life is far more magnificent than you could even imagine. Just be yourself… Your whole, entire, lovely self. Never feel as though you need to keep your illness a secret. Your special journey is an integral part of what makes you so beautifully and uniquely you. You have been blessed with a powerful testimony… You can inspire and help others simply by sharing your journey. Open your heart to Christ so that the full potential He has in store for you can unfold.
And Finally, Never, Ever Give Up Faith And Hope. — When you feel as if your entire world could fall apart at any moment, faith in God is what can hold the pieces together. Remember the moral of the story above? “Just because something is invisible doesn’t mean it isn’t real”. This stands true for faith and hope, too. Whether fighting an illness or otherwise, I would never want to even try making it through a single day without knowing Christ! When we place our faith in Him, we can always feel a sense of hope within our hearts.
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