Another Extension of Medicine and Social Networking…?

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I don’t have too many insights on chronic illness this week. I’ve been sick, the malingering, annoying, infection-y kind of sick, and well, there’s really not too much to say about it. It’s just an occupational hazard. Plus, with the book wrapping up soon, the hometown team on a World Series streak, and the upcoming NaNoWriMo, there have been plenty of distractions.

So I’m looking outward with this post, and can’t help picking up the topic of social networking and medicine another time. As discussed here and throughout the medical blogosphere, there are many benefits to the merging of medicine and social networking: Patients can connect with each other and share insights and information and practitioners can exchange tips and resources.

Between Facebook, MySpace, and LinkedIn, there are all sorts of ways for people to connect personally and professionally. It makes a lot of sense to me to have a site specifically designed for physicians, one that allows them to discuss techniques and best practice information and doesn’t require them to use their full names—enter Sermo.com, a Cambride-based social networking site for licensed physicians. After all, as this article points out, doctors are usually more focused on discussing treatment methods than the traditional networking business people do.

Since it launched last year, Sermo has attracted 25,000 physicians. I consider this trend to be largely beneficial—if our physicians are flummoxed by a set of symptoms or want to bounce ideas off of colleagues who specialize in their field, then providing them a space to do this gives the patient the potential for better outcomes.

What’s interesting about Sermo is that it is financed by hedge funds and other companies who have access to the discussions physicians have on the site. This allows them to track trends and controversies in the medical field and the doctors’ names are kept anonymous.

Like many discussions that involve pharmaceutical companies and their interactions with physicians, this interesting financing approach has the potential to become controversial when you add Pharma to the mix.

As reported in this article, drug giant Pfizer recently announced it will partner with Sermo. This arrangement will give the drug manufacturer—which laid off 20 percent of its domestic sales force in 2006—another direct route to reach in the hopes learning more about prescribing preference. Pfizer-affiliated doctors will be able to speak candidly with Sermo users, something that is either smart marketing or seriously worrying, depending on your point of view. Some think it’s a better alternative to swarming physicians with office calls, but others worry about the far reach this latest extension of social networking affords pharmaceutical companies.

So what do you think? As patients, does knowing that a large drug company will have unprecedented access to physicians make you nervous, or do you see it as an inevitable and positive technological step?

In other medical technology news, I came across this tidbit in Newsweek: the Cleveland Clinic has introduced a program called MyChart, which allows patients to access their online medical records through a password-protected site. The hope is that this access will mean better self-care and disease management, and preliminary results are promising: diabetics who used MyChart showed better control of their blood sugar.

At first glance, what Newsweek calls a “taboo-breaking initiative” (and I don’t disagree with that assessment) seems both positive and forward-thinking, harnessing the power of technology to help patients take control of their health. But a discussion in one of my classes got me thinking about the other potential outcome of this—what about those patients who would receive more harm than benefit from unfettered access to their medical records? One example that comes to mind are patients with eating disorders who are too focused on their weight and might get worse if they see numerical evidence they have gained any pounds.

Obviously I’m not sure what kind of safeguards or restrictions on use are in place, and I do think the precedent set by MyChart is a significant one. But in a world where so much can change so quickly, it’s also helpful to play the devil’s advocate now and again—especially when we’re talking about our health.

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It’s for the Kids…

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Something I think about a lot is the idea that as technology advances our understanding of diseases as well as our treatment methods for them, seriously ill children will live longer and hopefully qualitatively better lives.

So what should medicine and society be doing to keep up with them?

I’ll admit I have a special place in my heart for peds patients. A lot about the way this health care system works confounds me, but sick kids? I totally get them. I was fortunate enough to grow up as a patient in one of the best pediatric hospitals in the world, and as an adult I had the chance to work at a community home for the families of long-term inpatients at the same hospital. My work there inspired me to apply for a fellowship that helped support my development of a creative writing program for chronically ill pediatric patients.

So yes, I’m always on the lookout for innovative ways to make children’s lives better.

Enter the Medical Day Care Program (MDCP) at the Franciscan Hospital for Children. According to a recent article, the goal of the MDCP is “providing expert nursing care and educational enrichment to help children with complex medical conditions lead normal lives.” Field trips, arts and crafts, games with friends—these are experiences all children should have, and children with serious medical conditions shouldn’t be left out of them.

The MDCP also accomplishes an equally significant goal: helping the parents and families of these children. Caring for children with serious medical conditions is an incredibly strenuous task, so giving these parents a well-equipped place to leave their children during work hours makes a lot of sense, doesn’t it?

Here’s another program that makes a lot of sense: I recently read an article about a new program in Massachusetts that gives palliative support to the families of seriously ill pediatric patients.

As quoted in the story, “We’re trying to improve the quality of life and make the process of going through this type of illness more bearable,” said Stewart Landers, who oversees the program at the state Department of Public Health.

I’ve seen firsthand how crucial the support of hospice care is for patients nearing the end of life, and for pediatric patients, the issues are particularly challenging. Typically, someone can qualify for hospice care if they have fewer than six months to live and agree to forgo curative therapies. Palliative care is less common among pediatric patients because their prognoses are less certain and parents don’t want to give up on potential cures. Now, with less of these restrictions and more understanding of the needs of kids and families, hospice care is available for families at various stages of illness.

Though there are marked differences between the programs, common threads remain: sick children require (and deserve) specialized services to make their lives as “normal” as possible, and supporting their families and loved ones is an essential part of that process…and it’s nice to know there are organizations doing something to make this happen.

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Triage (And, A Space to Breathe)

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Because recent sad events have reached their inevitable end, some respite from the emotional intensity:

“I keep remembering one of my Guru’s teachings about happiness. She says that people universally tend to think that happiness is a stroke of luck, something that will maybe descend upon you like fine weather if you’re fortunate. But that’s not how happiness works. Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings… It’s easy to pray when you’re in distress but continuing to pray even when your crisis has passed is like a sealing process, helping your soul hold tight to its good attainments.” (260)

(Pause here, and apply to your own life circumstances if you are so inclined.)

The preceding quote is taken from Elizabeth Gilbert’s Eat, Pray, Love. I’m sure you’ve heard of it—according to Oprah, every woman around is reading it. Of course that’s exactly why I approached it with a bit of skepticism—surely we’ve read enough tales of down-and-out Americans traveling to exotic places and uncovering the basic truths of life that set them free from their miseries?—but I really enjoyed the book. There’s a lot to be said for figuring out how to be a whole self before you try to be someone else’s.

Abigail Thomas’s A Three Dog Life, which recounts the life she built after her husband suffered traumatic brain injury, is easily one of the most luminous, compelling memoirs I’ve read. One of its reviewers said something along the lines of it’s impossible to select quotes for it because the entire book is quotable, and I agree with that assessment. Today, however, this particular passage really resonated with me:

I thought I had accepted Rich’s accident, even though I kept putting myself in a place where it hadn’t happened yet … I thought that not accepting meant turning my face to the wall, unable to function. So now today I look up the word acceptance and the definition is “to receive gladly” and that doesn’t sound right. I flip to the back, and look up its earliest root, “to grasp,” and discover this comes from the old English for “a thread used in weaving” and bingo, that’s it. You can’t keep pulling out the thread. You have to weave it in and then you have to go on weaving.” (121-122)

(Pause here, and apply to your own life circumstances if you are so inclined. Call someone you love. Tell them that.)

***
For a unit on professional writing, my students and I have been talking a lot about the concept of triaging and how it relates to health information: If you are asking readers for their time and attention, provide them with something that contains substance. Write with clarity and purpose. Prioritize your information, placing emphasis on the most important facts and streamlining the least essential.

The questions and assertions we’ve discussed are also applicable to blogging, at once a profoundly personal and widely proliferating public genre, and they are things I think about a lot: where to draw the line between being authentic (so important) and lingering in the mundane minutiae of daily life (so overdone); how to balance the privacy of others with the human need to tell a story; how to infuse humor and levity in writing without sacrificing seriousness or scholarship.

I don’t have the answers nailed down, and I know I am not always successful in my attempts to uphold these standards. But in the back of my mind remains the advice an editor once gave me, advice that applies to all kinds of writing and advice I turn to often:

If you do not have something insightful or universal for the reader to take away from your work, then try harder. You can be specific, you can be particular, but always strive to produce something greater than your singular story.

Is there anything more universal and at the same time more intensely personal than grief?

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Behind Blue Eyes

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One of my grandmother’s favorite stories is this:

She and my mother were visiting me at my first post-college apartment. Though the apartment itself was a complete dive in that charming, no-heat-and-mice way only 22-year-olds can consider charming, it was located in a hip, swanky neighborhood next door to an even swankier cheese shop. Armed with brie, gouda, and mozzarella, the three of us stood at the cash register, patiently waiting for our change. The man behind that counter happened to be an amateur photographer, and he asked to take our picture.

“Three sets of blue eyes, three faces so similar all lined up. Three generations. You can’t deny genetics,” he said as he snapped away. My grandmother blushed and smiled proudly.

She brought that story up several times over the past five years, always marveling at how strangers knew we were linked to each other by our blue eyes. I always wished I’d stopped back at the cheese shop and asked for a copy.

One of my favorite stories of my grandmother is this: She was babysitting the three of us while my parents were away. It was dusk on a cold February night and my brothers were playing street hockey. She and I were in the living room, each holding a thick hardcover book on our laps, completely engrossed. For different reasons, we’d both turned to books at early ages and had never let them go.I looked up and saw we were sitting with our legs crossed the same way on each end of the ottoman, our toes tapping along to the music from the Bose stereo in perfect synchrony. We spent an hour like that, never speaking.

Of the three of us, my grandmother’s eyes are the bluest. A piercing blue, not in an icy or severe way but in an intensely expressive one. My mother buys her Talbots sweaters in all shades of blue—turquoise, periwinkle, navy, royal—to bring out the color in her eyes. Now, in her blue and green johnny and flanked by a blue curtain cordoning off her hospital bed, her blue eyes are startling, especially against her pale face.

My grandmother has always been an intensely private person, and her story will remain private here. I will say, though, that from her earliest years she experienced profound losses, the kind of life-defining losses that either shut you down altogether or recast the boundaries of your survival. She didn’t shut down.

She is reserved but not shy, and her face reveals the depth of expressions she otherwise keeps to herself. A life of the eyebrow, a narrowing of the eyelid, a widening between the lashes, a crinkling at the corners—in a glance, dismay, skepticism, joy, whatever she is feeling, is evident. We often tease her about her “drop dead” look, a glance so fierce and penetrating that as children, we only needed to see it for a second to stop whatever we were doing that she found unacceptable. She can still stop my mother in her tracks with it.

Some say I have inherited that look. My husband will have to confirm this.

After the first stroke, she seemed smaller and frailer. Her eyes seemed bluer. She could speak in coherent sentences, but you could see the strain to locate the right words in her face. She scrunched it up, as if so to say to us, “Do you know how annoying this is?” But she talked, nodding emphatically in the right places and following up with questions of her own. We brought her books and magazines, but for the first time in her reading life, they were left untouched.

The human brain is an uncanny captor. After the second stoke this week, she lost the use of her right side. She cannot speak, but expends huge amounts of effort trying to make herself understood. She shook her left fist in frustration today. “I’m not going anywhere. It’s okay. You can take your time and try again,” I told her. And softer, so my mother did not hear, “Don’t be scared.”

She nodded slightly.

“Every time I see you, Dolls, your eyes are bluer than ever.” I started saying this, using her nickname, in the hospital this summer and then it became our little thing—every visit to the rehab and the nursing home began with it. I tell her this again today, and she blinks at me. She knows.

She no longer has the ability to swallow and cannot take anything, even juice, by mouth, because she aspirates it. If you cannot swallow and you have put in writing you do not want a G-tube, suddenly the timeframe and the options available in it are much smaller.

So it is a period of difficult decision-making, and we talk about what is going on in front of her. He brain will not allow her to swallow or speak, but it allows her to know what is going on. I’m not sure if that is better or worse, because the things we say are frank.

I kissed her head and told her I will be back tomorrow. “I love you,” I said. She met my eyes and held my gaze. “I know,” she told me without saying a word.

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Radio Update

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If you want to listen to it, you can find the audio file for the Get Real Girls Interview on the sidebar at the right, conveniently located in the newly streamlined “Select Publications and Publicity” section. I tested the file on a Mac and a PC and it worked fine on both, but let me know if you have trouble with it. A Barenaked Ladies song fills the first few seconds and is the lead-in to my segment.

You can also find the brief feature on me and link to the entire show at 107.1.com.

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Specialists, Specialists Everywhere, But for the Little Things, Not a Doc to Spare

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The last time I had any sort of primary care doctor was when I was in first grade, up until the pediatrician who referred me as a baby to the ENT and immunology doctors handed me off to them altogether. It appeared I wasn’t exactly an ideal candidate for generalized care. Considering the strep that sent most little kids to the doctor’s office for a quick swab test and some meds ended up spewing from my ears and lodged in my knees, I can’t really argue with his logic.

For most of my childhood and young adulthood, I rotated among specialists for a confounding array of ailments: an asthma/allergy doctor for my lungs (and we all know how well that went); an immunologist for my IGg deficiency disease, an ENT doc for the ever-present (and sometimes life-threatening) infections and surgeries, a rheumatologist for the joint inflammation that began in my lower back at age 10. There was also the orthopedic surgeon who fixed my ankles and diagnosed my knee problems, the specialist who dealt with my enlarged liver and spleen, the urologist, the endocrinologist, and many others.

No wonder my genial suburban pediatrician looked at me and secretly wanted to run in the opposite direction. (And can you just picture what it was like when I was asked to supply copies of my entire medical record? I think upwards of six hospitals had a piece of me.)

It was (and is) a precarious position to be in, and I cannot help but think of the overused analogy of the quarterback: I had lots and lots of team players responsible for different things, but I had no one coordinating all the moving parts.

I still don’t. I have my lung doctor, who is amazing. I actually have to suppress the urge to tell him he’s a rock star when we communicate via e-mail because I do not want to sound like a crazed fan or something. I have a scarily smart rheumatologist who oversees various infusions and inflammations and serves as my de facto primary care doc, but her office is busy and isn’t made to handle acute (but minor) things that aren’t technically related to rheumatology. I still have a handful of other specialists who deal with isolated problems and body systems, and I see them and undergo their suggested tests.

I am not arguing against specialized medicine. I would be foolish to do so. If it weren’t for advanced, sub-specialized care, I never would have received diagnoses for rare respiratory diseases, diagnoses that have changed my life. I depend on the cutting-edge research into ridiculously niche problems my specialists conduct to maintain my quality of life and hopefully change the future outcomes of progressive diseases like mine.

That’s no small order.

But whom do I turn to when I have a nagging headache that persists for weeks? I know (because after 20 surgeries, you just know these things) it isn’t sinus related, and my eye prescription is current. What about the fleeting dizzy spells and intermittent fog that is different from the chronic fatigue or adrenal depletion? Do I start with the ENT doc and move outwards after that? Call up the rheumatologist and see if she’ll take a crack at it?

And what about all the normal things other people get checked for during physicals? I can’t remember the last time I had a physical. I know that many, many important things in my body are monitored regularly, but for all the sophisticated tests and labs I have, are there smaller routine things no one is checking because everyone is looking at something different?

I’ll figure it out, I know. I have a lot of weird issues that necessitate a lot of doctors and I can’t argue against that.

But when niggling things manifest, I’m not sure any of them are appropriate people for me to bother. I’m thinking of taking the plunge and getting a certified primary care doc. I hear they’re something of an endangered species, and I fear people like me are largely responsible for that. But if they’ll have me, I just might like one of them….

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Radio Debut…

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I’m branching out a bit: To my surprise and pleasure, I was contacted this week by the co-host of Get Real Girls, a popular weekend radio show that airs in Minneapolis on FM107.1 and online at EatBetterAmerica.com. The show is devoted to helping women live their lives with intention and purpose. This weekend, they are focusing on letting go of guilt, and after reading an essay I wrote that appeared on Chronic Babe, they selected me as the Get Real Girl of the Week.

The interview will air this Saturday and can be found on 107.1.com, where they also have a brief feature on me.

I promise I will try not to talk too fast. This is no small promise.

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September Lessons

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I’ve always loved fall. Some of my reasons are more typical ones: I love the vibrant colors of the leaves, the smell of burning leaves, the cool days where I can wear a sweater and not be too hot or too cold, the abundance of root-vegetable inspired dishes. I love the way the nutmeg and cinnamon-scented candles I use to replace the flowery smells of summer fill my living room, and the way the smoky aroma of grilled meat at football tailgates lingers in the air.

Plus, I am huge dork. Fall has always been synonymous with “Back to School,” and for dorks like me, this is a big event. When I was little, I would start planning my back to school shopping in July—not the clothes, mind you, because I wore a uniform from first grade through high school. No, much to my brothers’ horror, I was focused on such weighty issues as Trapper Keeper versus regular folders, erasable pen versus regular pens, and whether I wanted standard or college-rule lined paper.

And summer reading? I’d have finished it all within the first couple of weeks of summer and would count on the diligent notes I’d taken to refresh my memory in late August.

Obviously the older I got the less critical things like Trapper Keepers and erasable pens became, but fall (and September in particular) continue to have meaning for me, and my reasons for this are less typical.

For starters, the simple act of breathing is easier. True, my temperamental lungs never handle the change in seasons too well, but once we’re firmly entrenched in fall weather and I can say goodbye to the humidity that suffocates me, I am happy. I don’t mind the infections as much if in between them I can actually inhale and exhale without feeling like I will never get enough soupy air.

But beyond pragmatic changes like the weather and going back to school, for as long as I can remember fall has also been synonymous with this thought: “Maybe this year will be my year.” The clean slate I’ve been waiting for, the fresh start every student gets, the year no major calamities occur.

When I was little, “my year” would have looked something like this: No surgeries to accompany almost every holiday and long weekend. No weeks’ long absences. No streams of blood gushing from my ears, ruining my pillowcases and making me hesitant to sleepover friends’ houses. No missing birthday parties and ballet recitals and skating shows because I was too sick. No broken bones and casts with classmates’ signatures, no missing the bus because I needed another nebulizer treatment. No sitting on the sidelines at Field Day every May, watching everyone else run and compete.

In college, “my year” would have looked something like this: No missing weeks of classes each semester due to hospitalizations. No needing my friends to take me to the hospital or visit me during my longer stays. No needing to ask to borrow notes or make up more essays, no needing to conference call the campus newspaper from my hospital bed, oxygen mask and all. No needing to worry my parents with late night calls from the ICU, no getting worse and worse despite the more medication I took. No more feeling like all I did was put my life on hold for illness, and no more feeling like however much I gave up for illness, it would never be enough to make me feel better.

It was a vicious cycle of disappointment I set up for myself. Obviously I never got a year like that, and the more I wished for one and counted on that fresh, clean slate to feel normal, the harder it was when it never happened.

I still get excited for September, and I still get anxious to go back to school. I enjoy my writing students and their work, and I like the structure and routine of semesters. But I no longer count on each September to herald in “my year” and I am much happier because of that.

Don’t get me wrong, it is not that I have become resigned to crises and medical issues, or that I have given up hope that an uncomplicated medical life exists somewhere out there, and I am happy to say that the crises aren’t as pronounced as they used to be. But I’ve stopped setting up expectations that are counterproductive. It’s not about starting over each September with a clean slate or getting back to normal (whatever that normal is); it is about accepting that where I am, disruptions and all, is what is important.

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So What About the Healthy One?

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I started a line of thought in my most recent post that warrants its own entry: the reason no illness is ever truly invisible is because the people who love us can decipher the many signs and symptoms of illness no one else can. I think it’s important to explore what it’s like for our partners or spouses when a shared illness is invisible, because it isn’t easy. It isn’t fun, or glamorous, or fleeting.

And it certainly isn’t fair.

I mentioned previously that my husband can tell from the single word “hello” if I am having a bad day. The reason he is so attuned to me is because he has spent our entire relationship doing things for me and because of me that no one ever sees:

Performing my chest PT when I need an extra treatment. Racing to hook up my nebulizer when I can’t get it myself. Picking up my prescriptions and accompanying me to doctor appointments when I am too weak to get there on my own. Eating outlandish food that does not contain wheat, poring over recipe books to make my limited diet more interesting. Wiping my forward when I am clammy, holding my hand when I have palpitations. Taking me to the ER and spending nights wide awake next to my hospital bed. Rubbing my back when I cannot stop coughing and knowing when to thrust the spit cup under my mouth. Staying nonplussed when steroids make me moody and unpredictable, carrying things for me and doing all the shopping and housework and lugging when I cannot help him at all. Understanding when we have to cancel long-awaited plans, miss outings and trips, or have to leave early because I am not feeling well.

(Loving me when I am at my lowest, loving me when I cannot recognize myself.)

And these are just the physical things, the actions and reactions precipitated by symptoms and medications and infections. I cannot leave out all the other realities of his life with me: The enormous medical expenses that will never go away. The financial ramifications of the career choices I have made in the interest of my health. The fact that in some ways, we are limited by my illnesses in ways that have nothing to do with stamina, oxygen stats, or infection rates. The fact that no matter what, progressive diseases mean things will never be uncomplicated and there will always be nagging fear.

“You’re sure you know what you’re getting into, right?” I asked him during our engagement, only half-kidding. But the man who was not scared by IV bruises the night we met, who did not mind spending part of our honeymoon scouting out a Walgreens and playing Scrabble while I used my neb, does not seem daunted.

(He’s crazy, I think to myself. And I’m lucky.)

Acquaintances are surprised if they find out I am sick, and friends who do know often do not realize it is in any way life-defining. This is because I look healthy when we split bottles of wine and pore over appetizers; this is because they do not see me on any sort of day other than a good one (and lucky for both of us, there are so many more good days than there used to be). So aside from my immediate family, I do not think many people realize the cost of invisible illness for him, for anyone who chooses to spend their lives with people who will have good days but will never be healthy.

I do not think my husband spends much time thinking about this, or wishing people understood the pressure and responsibility of illness. But from my perspective, I think it would be hard for anyone in his position. Because for as many people there are who ask me how I am doing and how I am feeling, far fewer stop to ask him how he’s doing with all of this, how he’s feeling. I am the patient, so I am afforded the empathy and the queries.

And so in the background stands the person most responsible for all the days when I can safely tuck my illness away underneath invisibility, and no matter what I can hide from outside eyes, it will always be visible to him.

(Even when I wish it wasn’t.)

Individual symptoms and diseases are less important than the fact that whatever is wrong with someone directly influences the people in his or her life. With that in mind, and all the other healthy people involved in relationships with patients of any chronic illness, I want to point out that the Well Spouse Association’s 19th Annual Conference is happening this October. For more information, click here.

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Seeing the Scope of Invisible Illness

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Today kicks off National Invisible Chronic Illness Awareness Week, making it the perfect time to tackle the realities of living with illnesses that aren’t obvious to the naked eye. This year’s theme is “Living with an Invisible Illness Feels Like a Roller Coaster—Help a Friend Hold On!”

As someone with many different invisible illnesses, I find this theme compelling. On the one hand, it implies that this kind of life can be difficult and that patients need support and understanding—very true. Yet it isn’t as simple as that. The roller coaster metaphor immediately conjures of memories of white-knuckled ascents up steep hills and the rush of relief that follows. These highs and lows, the white-knuckled anxiety and the carefree moments, they are all part of invisible illness.

But You Don’t Look Sick
You knew I was going to start here, didn’t you? That’s because of all the issues tangled up in this discussion, this is the most obvious and probably most relevant. Why even bother having a National Invisible Illness Awareness Week? Because when you’re sick and there are valid reasons why you can’t do something the way you want to or are worn out or need help and you look otherwise healthy, that disconnect can cause big problems.

If I don’t look sick, then I must not be sick. If I don’t look sick, then I shouldn’t need to take the elevator when I am carrying a heavy bag and four flights of stairs seems like it would take way more oxygen than I can get. If I don’t look sick, then I shouldn’t have to re-arrange plans to accommodate chest PT sessions, or quietly leave the dinner table so I can cough without making a scene.

Duh.

Similarly, people with serious illnesses who do not “look” disabled shouldn’t need handicapped parking placards, or people who are young and dress well and wear make-up couldn’t possibly have a life-threatening or life-altering disease because truly sick people are only found in hospital beds, wearing faded johnnies and cracking wan smiles, and they certainly don’t look like normal people. I know enough people with enough invisible illnesses to know that this kind of thinking happens all the time.

This is the frustrating, anger-inducing part of the roller coaster metaphor, the one that quickens my pulse and flushes my face. I’m not asking for or expecting understanding from these people. I don’t really need it, and I’m not expecting miracles here. But there are times when I just want them to keep their preconceived notions of what sick looks like and their judgmental indignation to themselves.

Escape, Sweet Escape
I’ll be honest, there are lots of times when I am glad that whatever is wrong with me is largely undetectable on the outside. Sure, it can be isolating to feel like crap and slog through the day, trying to be “normal” and feeling so far from that. But there is a very real upside to this isolation: Escape.

Remember that rush of relief when the stomach-churning drop is over? That’s what I’m talking about. “Carefree” is not often a word associated with illness, but I’d say “caring much less” is a big part of it.

If no one knows anything is wrong with me, then for a little while, whether it’s at work or out with friends or riding the train, I can suspend reality. Having chronic illnesses is only one part of who I am, but sometimes necessity dictates that it seeps over into the other roles I take on, too. I don’t want to always think about, talk about it, make decisions based on it, or be associated with it.

And luckily, I don’t have to. The public, non-patient persona is really important to me—and, I’d argue, anyone with any type of condition—because, quite simply, it allows me to define myself in so many ways that have nothing to do with illness. Illness is always there, obviously, but it’s in a back-seat role.

And Lastly, the Invisible Made Visible
There’s something else to uncover in this discussion, something that perhaps isn’t as obvious a theme as the first two: To the people who really matter (and the people whose opinions likewise really matter), there is no such thing as “invisible” illness.

My mother can tell just from looking at my eyes (Are they glassy and flat?) if I am having bad day. My husband knows from the tone in my voice from one single word—“hello”—if I am not doing well. Even at a distance, my father can tell from watching me take two steps how I’m feeling. My friends know the subtle difference between the “just me being me” cough and the “hmm, something’s brewing” cough, even if I’m not even coughing all that much or that loudly.

I know how important having that inner sanctum familiarity is. I can see the same signposts in the sick people I am closest to: the slackened gait of exhaustion, the subtle grimace of joint pain, the tempered tone of tiredness. To the people who know us best, there are always telltale signs, ones that no one else would notice. As long as we have people who can see beyond what’s seemingly invisible, we have what counts, and the ride seems so much more manageable.

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