Category Archives: Relationships

These Three Things

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It was a cold, rainy, dank morning in Boston today. Since I am stubborn and would rather put on another layer of clothing than admit it is time to put on the heat, it was an especially cold, dank morning in my upstairs office. (Update: I have since relented and turned the heat on; when I repeatedly stopped typing to rub my hands together, I decided enough was enough.)

Anyway, I had my music set to shuffle when a song from David Gray’s White Ladder started playing. Between the dreary weather and the music, I was immediately transported back to my year in Dublin, when that album was immensely popular and I would listen to it on repeat in the tiny living room of my apartment. David Gray was the soundtrack for train rides to Galway and Belfast, for spelunking trips and jazz festivals, for marathon paper-writing sessions and impromptu dinner parties.

In those days, I wanted time to stand still. I loved Ireland, I loved the friends I made and the classes I took, and I even loved the way my lungs responded to more consistent weather. One academic year was not long enough, and from the first September week I unpacked my bags and walked down Dame Street to Trinity College Dublin, I dreaded the June day that would take me back home.

Everything was an adventure, and the unpredictability of that was enthralling. It was so unlike my normally intense, over-committed schedule and my innate tendency to plan. I didn’t have answers, and I didn’t need them.

And here I am nine years later, listening to David Gray and the sound of the rain while I type away. This time, I smell herbal tea, not the smell of hops from the Guinness Brewery nearby, and the morning din is punctuated by dogs barking, not the bells of Christchurch Cathedral across the street.

Most notably, right now I would do anything to make time move faster. If I put my head down and just make it work, then before I know it spring will arrive and I can exhale again. I will get through the long winter months whose infections and setbacks already have their tentacles wrapped around me, months that have me holding my breath, steeling myself for what they might bring.

I will make the deadlines and finish the projects and the early mornings and late nights and weekends will blur into one composite as they recede into the background. In my research work I am asking so many questions I do not know the answers to yet and that is a good thing but it leaves me unsettled. A few more months of parsing the information out and who knows, maybe I will have answers. Or maybe I will just have more questions.

There might be more answers to major decisions that take too long to sort out, decisions with no easy solutions but lots of potential.

If I start to think about all of this, I get overwhelmed. Instead, I try to focus on the present, on today’s To Do list and today’s set of concerns and challenges. I cannot fast-forward through until spring anymore than I could freeze time and stay in Dublin nine years ago. I didn’t want to plan things back then, and I have very little control over planning a lot of things right now, and the irony does not escape me.

I came across a quote recently (and yes, it is up on the big combination board of chaos) that reads:

“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for…” (Tom Bodell).

I do not lack for these in any category, so maybe that’s the answer I need to stay present.

Beyond Memes: Public versus Private

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There’s an interesting meme going around Facebook and blogs right now: 30 Things About My Invisible Illness You May Not Know. With Invisible Illness Week quickly approaching, the questions posed are particularly resonant.

I’ve thought a lot about how I’d answer the questions. For some, I had immediate replies, like “Something I never thought I could do with my illness that I did was __” (live abroad for a year) and “The hardest part about mornings are __” (trying to be awake and, you know, pleasant for early morning chest PT). But several of them touched on things that my experiences don’t speak to in the same way; namely, the “before” and “after” of illness onset, or, most notably, “If I could have one day of feeling normal again I would__.”

Like many lifelong patients, this is my normal. I cannot long for what I cannot imagine. But the question of which is better, to have known healthy before getting sick or to have never known healthy—a question that comes up fairly often—actually hints at something deeper than these static boundaries. This is my normal, this is the life I created from the circumstances in which I found myself and I would not trade what I have created for a taste of a different meaning of normal.

Though I’m not going to complete the whole meme here, I think it can be incredibly useful, and not just for people adjusting to sudden or adult-onset chronic illness. As I read people’s replies about what nice/surprising things others have done for them, it hit me how much of that is my normal, too. I’ve always been sick, I’ve always been surrounded by friends and family, so I have, quite literally, grown up having people respond to me with compassion, loyalty, and empathy.

In fact, the hospital visits, cards, phone calls, Fed-Ex’ed mix CDs, etc and the intrinsic knowing that there are people who will come in the middle of the night if they are ever asked form such an enormous debt of gratitude I feel no amount of similar deeds I do for others can ever repay it.

(Of course there have been moments of the opposite, and friendships that didn’t survive this, but like the careless comments, insensitive assumptions, or completely inane expectations I’ve received, they are exceptions, not the norm. Er, normal. Not trying to pun here.)

I’m not saying I haven’t had adjustments to make, or new realities to forge. I didn’t get correctly diagnosed with some of my more serious problems until I was an adult, and my treatments changed significantly. And like most patients with chronic illness, my health status fluctuates frequently and drastically, so life is a constant cycle of readjustment.

After mulling this over for a few days, though, I think the more striking “before” and “after” I can point to is that between illness being public or private. For twenty-three years I was sick and while it seeped into everything I did and every decision I made, it wasn’t something I talked about outside of family, friends, teachers, and of course, doctors. I’ve had some sort of a byline since I was 14, but the only piece of “public” writing that concerned illness was my college essay, and that was mainly because I felt I should probably explain why I missed the better part of two years of high school. You know, minor details.

And then, as the story goes, I found myself in a nonfiction course in my MFA program with a looming deadline and I didn’t know what else to write about, so I wrote about life in the hospital and suddenly, eleven other people knew more about my thoughts and emotions during medical crises than most people in my life did.

Weird.

A few years, a few hundred blog posts, one book and another in the works, and many, many exchanges with other writers, bloggers, and patients later, here I am. And as much as I work to update and refine my reality based on the color of my lung secretions, how much air I can breathe in, or what other random infection or problem that springs up, I find the balance between private and public just as important and just as complicated.

I strive for the universals of modern chronic illness but know those depend on particulars. After all, all writing must tell a good story, and that story comes in the details. I embrace the conversations and explorations a more public illness experience allows for, and I appreciate the irony that people who read what I write are sometimes more in tune with what’s going on than people I know—it’s a macro version of that first workshop experience I had as an MFA student.

But for all the stuff that happens offline, the daily minutiae and the more serious decisions and reactions that are part of my normal that do not make their way into my posts, I am equally grateful for the private experience of illness.

And so to return to the meme, let’s look at #26: “When someone is diagnosed I’d like to tell them__.” Based on this post, I’d tell them of the value of online communities and social media, of how interesting and affirming it can be to read other people’s experiences and see traces of your own story in them. I’d tell them to connect, to leave comments on blogs, to know no one has all the answers but you should always be open to learning from others’ perspectives.

And I’d tell them that the best-case scenario is to also have someone you can call when you are crying and need someone to hear the tears, or when you have good news that the people who have traveled this long road with you offline can appreciate the most.

Hope (or something like it)

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“Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chilliest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.”
—Emily Dickinson

Fourteen years after I learned this poem for my freshman English class, I still remember every line. No, this is not because I am a fervent Emily Dickinson fan but because the paper I wrote about this poem turned out to be the first of several papers my teacher proceeded to read to her sophomore class, according to the sophomores cornered me at lunch to tell me. They were not at all impressed.

To get an idea of how awesome it felt to be the English nerd, here’s some more context for how cool I felt: the fall of my freshman year in high school, I was in a new school where a.) everyone knew each other already and b.) no one had ever heard of my hometown and didn’t seem all that interested in finding out more about it–or me. While everyone bonded on fall sports teams, I hobbled around on crutches, my reconstructed ankle still months away from healing. I prayed my ears wouldn’t visibly spew infected crap during school hours, and tried to hide how wheezy I got traipsing through the sweltering hallways one crutch step at a time.

Oh, and obviously I had glasses and braces, but come on, you knew that was coming.

As an adult, I can somewhat appreciate my teacher’s misguided enthusiasm for my ability to write a cohesive essay, but I wish she’d, you know, just written me a margin note or something instead of using my work to coerce her other classes into writing. She did my one-girl crusade for normalcy (invisibility?) no favors.

But enough digression. I’ve been thinking a lot about the word (or really the concept of) hope lately.

Some more context: I am a person of extremes. Now, I’ve evolved a little from my crazy full-course-load-and editing the school newspaper-and interning-and volunteering or spending-weeks-in-the-hospital dual existence in college. I’ve gotten sicker, I’ve matured, I’ve changed my treatment regimen, I’ve re-prioritized things and I’ve learned that occasionally, limits and common sense are good things. There is a middle ground between 18-hour days and the ICU.

But in many ways, I am still all-or-nothing. It is a strength and a weakness. Those who know me in real life know this. I know I certainly experience my emotions like this. When I get good news or learn about possibilities, I get so excited. The tenor in my voice changes, I have more energy, I am consumed. When there is reason to be joyful, I am not someone who can hide it, not in my words, my diction, my gestures, my expressions.

And this is a good thing—I don’t want to become someone who cannot or does not experience things so fully. But it is not without complications: my expectations for things are high, and my disappointment is correspondingly low. I can be hot-headed, and easily frustrated when things don’t work out. I can push things past the limit, and I can get too focused on doing to remember that goals are great but this does not mean they are not subject to revision. And sometimes should be subject to revision.

As I sit here preparing for another fall semester, I can’t help but think of that poem for more than its cringe-worthy memories. Though it has only been hot and summery for a few days in Boston, the shadow of autumn still manages to cut through the hazy humidity of summer. Leaves are scattered across the lawn already, and syllabi and new schedules must be set.

And for as much I love the fresh slate that is September, I am not ready. I’ve only just gained some semblance of stable health and in such a visceral way, I dread giving pieces of it back to every infection I know will come. My jaw clenches thinking about it. I do not want evenings to start at 4pm, I do not want to cough up blood, or lose holidays and weekends.

I would love September, if only October-April did not follow it.

I’ve put in long (long) hours on the book I am writing, and have realized the process is much slower than I had anticipated this time around. Reluctantly, I take research detours and “let things marinate” because it is what the book demands, but it goes against my nature to do this, especially with my daily word count stipulations hanging over me.

I’m expanding my editorial business and love connecting with clients and taking on new projects, and my excitement for it consumes me.

I am not patient. If I were, I would not exist so often in extremes. I have high expectations for my writing projects, for my career, for my health to remain stable, and for our future family (and that is certainly not an easy or quick process, either.)

I do not want to stand still when it is my nature to equate motion with progress. I do not want setbacks or delays; nor do I want winter, or to miss daily word counts, or to have taken such a circuitous route thus far towards being a parent.

And yet I yield.

All I can do is have hope: hope that things come to fruition as they are meant to; hope that I will have the wisdom to know when to pull back or push forward; hope that decisions we make now are right later, and hope that I don’t ever move too far from extremes. I don’t ever want to forget that fluttery, excited, jittery, all-consuming feeling. It took me fourteen years to name it as hope.

Synergy (in an unexpected way)

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It’s been somewhat of a synergistic week.

Someone I love is in the middle of some serious health issues. I’m not going into detail because it’s really not my story to tell but more than that, the physical details don’t matter. What does matter is that this person faces a very long and difficult road, and is frustrated and in a lot of pain.

And I am on the outside. I am able to listen and make phone calls or do errands, but completely unable to do what any of us who care really want to do: make it better.

While I can understand the frustration and isolation of illness better than others might, even this familiarity is not enough to bridge the gap. Being able to understand the emotional aspects of this situation does not make me feel any less useless, or helpless.

And with that, I stopped and realized what it must sometimes feel like for the people who love us—so much of all of this is out of their control, too. We often write and think about control in terms of our own bodies—what medications we take, what preventive steps we adopt, what can go wrong not matter how carefully we plan otherwise.

But those who love us have their own frustrations (and I know this is but one of many). They can do so many amazing things for us day in and day out and most of the time, that’s enough. Most of the time, we’re all probably too busy living to stop and think about it much. But every now and then, it must really stink to stand by and watch someone you love go through a bad spell and not be able to do the one thing you want to, which is to fix it.

A couple of years ago I wrote this piece on marriage and chronic illness. I re-read it today, with an even deeper respect for what it takes to make a relationship so much more than the sum of its challenges, and an even deeper appreciation for my husband, who for four yeas (as of today) has shown me what it means to put someone else’s interests above your own without hesitation.

I know I am one of the lucky ones.

On Being Better Patients—The Follow Up

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My last post on how to be better patients to each other stirred up some conversation—turns out (once again) that despite differences in diseases and symptoms, many things unite us, especially when it comes to waiting rooms, hospitals, and emotionally-charged situations.

As a follow-up to that conversation, I want to explore an issue one of my readers brought up in the comments section, something I touched on very briefly in the post—the idea of illness as a competition. “Illness isn’t a competitive sport” is the exact phrase that comes to my mind, and until very recently, I wondered how widespread the phenomenon was. Was it a dirty little secret of life with chronic illness, something that occurred in waiting rooms across the country? Or was it something more unique to the particular doctor’s offices I frequented? Judging from the initial response, I suspect the former is the case.

You know what I’m talking about, right? You’re sitting in your chair, perhaps leafing through a magazine or engaging in idle conversation with other patients in the room. Somehow the conversation around you turns into a bizarre sort of one-up-man-ship, with patients swapping war stories, surgery tales, and escalating degrees of complaints. The tenor has changed from surface-level camaraderie to a competition.

It’s an interesting phenomenon. I’ve never seen it get to the point where there’s almost a fight over whose symptoms are the worst, as others have mentioned, but I have seen it get pretty intense. Most times I ignore it, but sometimes it gets to me and I cannot wait to be called back just so I don’t have to hear it. It’s stressful to sit there and listen to so many things that are wrong. After all, everyone’s got something, or none of us would be there.

My reaction has always been, who would ever want to win the “sick” competition? That just doesn’t seem appealing to me, or worth it, or in any way productive. And I have to believe that no one really does want that title.

Obviously illness can be really isolating, so maybe people are just lonely and need some place to vent. Maybe they’re in a tough phase of acceptance or adjustment and their symptoms are especially overwhelming. Maybe their illness is a huge part of their identity and in the moment, someone else’s condition is somehow a threat to that identity. Who knows. But I don’t believe there’s any maliciousness or mean-spiritedness in it, and I don’t think it’s even an intentional escalation or competition.

And I think it’s just normal human nature to hear something and think, “You think that’s bad, how about X?” I know when I’m at my rheumatologist (which, for whatever reason, is where it happens the most) and listen to the back and forth I sometimes think about someone I know who’s had multiple major (invasive) surgeries and excruciating, degenerating pain and think these people are actually pretty lucky.

And clearly that’s not fair of me. Other people’s pain and illness are still very real and altering even if they don’t seem as severe as someone else’s. (And I say “seem” because really, you never know what someone else life or situation is truly like.)

At the same time, I’ve also felt funny even coughing at my lung specialist’s because I know there are some seriously sick people treated there, people waiting for transplants to save their lives, people who cannot live without constant oxygen, people I know are so much sicker than me. (They’ve never made me feel that way—most don’t even talk, it’s just a self-consciousness I feel).

And that’s not fair either, because this isn’t a competition and no one need apologize for not being as sick.

And I think the reason both those instances aren’t fair is what I will call Rule #7—No one has a market on suffering. Especially when we’re at the doctors, and we’re probably all a little anxious, and no one’s feeling all that well.

Especially when you consider the saying posted over on Hemodynamics:
“Be kind, for everyone you meet is fighting their battle too.”

Whaddya think?

The Patient-to-Patient Relationship

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One of my long-time favorite bloggers, Dr. Rob of Musings of a Distractible Mind, has gotten a lot of press lately on Tara Parker-Pope’s Well blog in the New York Times. His posts on what six things doctors should know and how to be a better patient are insightful, practical, and, judging from the volume of comments they elicited, they touched on topics at the forefront of people’s minds.

I’ve written a lot about the doctor-patient relationship on this blog, and discuss in detail how to establish a successful partnership with doctors and become an empowered patient and advocate in Life Disrupted, and it’s wonderful to see these issues covered from the physician’s perspective.

I’ve spent a lot of time having appointments and tests lately (this recent health static also explains the slight delay in postings this week), and I can’t help but think there’s another angle to this larger discussion on relationships in health care—the patient-to-patient relationship. After all, from crowded waiting rooms and emergency departments to double-occupancy hospital rooms and rehab groups, we don’t just spend time with practitioners when we’re living with chronic illness. We spend a lot of time in close proximity to each other, and since we’re all in this together, there are definitely things we should remember to be better patients to each other:

1. Be punctual, and if not, proactive—Show up on time; one late arrival can often cause an ugly domino effect on subsequent appointments. I usually have an uncanny knack for getting on the road just when a lane has been closed, an accident has just happened, or some other traffic-inducing calamity occurs. As we all know, despite our best efforts and best intentions, life happens, and we can’t always control our arrival time. But if you realize you’re not going to make it in time, make a reasonable attempt to let the office know, and estimate when you think you’ll show up. This way, they don’t give away your appointment entirely, and might be able to make up the time other ways if they have advance notice. It’s the fair thing to do for all the other patients who do show up on time.

2. Cell phones are great in an emergency, but totally annoying in other settings—Loud ring tones and even louder telephone conversations have no place in a waiting room, ER bay, or hospital room. Besides the fact they might interfere with medical equipment, they are disruptive and distracting to other patients, who may already be anxious enough. Keep your ringer silenced and if you do need to take a call, step out into the corridor, the front entrance, or any other place where your personal business doesn’t infringe on someone else’s. I’m always attached to my cell phone, so reminding myself that I don’t have to answer every call or that I can call the number back from outside takes practice.

3. Triage exists for a reason–I can’t count how many occasions I’ve watched people become irate and even antagonistic when they’re waiting to be seen in the ER and others are called first, anything from sniping in their seats when other names are called to repeatedly (and loudly) badgering the front desk. Such behavior makes it harder for the rest of us, who are also impatient to receive medical attention and who are in pain, too. When we’re uncomfortable, scared, and anxious to be seen, it’s certainly understandable that we may get impatient, but the ER is not first come, first serve. That doesn’t make waiting for an X-ray of a broken bone or a CT scan for a painful abdomen any easier, but there’s a reason patients with more severe injuries or complaints jump to the head of the line—their lives may depend on it. As a related item, in a regular office waiting room, remember that many practices have patients in the same waiting room visiting different doctors—just because you’ve been waiting longer than someone else doesn’t mean you’re getting skipped, it just means that person is probably seeing another provider.

4. Remember there’s another side to the story–I’ve totally been that irritated patient in the doctor’s waiting room, annoyed that my appointment time has come and gone and worried about the work I’m missing. But I’ve also been that extremely sick patient who got worked in at the last minute because I couldn’t afford to wait, and my doctors couldn’t afford to delay diagnostic tests and evaluation, the patient who backlogs the schedule and takes up a lot of time. While I’m not always successful at it, when I start to get antsy and annoyed I try to remember the times the tables have been turned and other people have had to wait on account of me. I try to dial it back a bit, and be glad that I am there for non-emergent reasons.

5. Pay attention to social cues–Sometimes, there’s nothing better than some conversation in a waiting room. Whether it’s commenting on a headline, discussing patient education materials, or comparing notes on a similar condition or medication, polite chit chat or commiseration can pass the time and even forge temporary bonds. But you never know what’s going on in someone else’s life, what their health status is, what they’re worried about in their impending doctor visit, what other life problems are on their minds. Some days are just bad days, when people don’t feel like idle chitchat and don’t want to engage in conversation, and may not want to hear about the particulars of your condition. Be sensitive to those cues, and don’t take it personally if someone doesn’t reciprocate your friendly gestures.

6. Don’t make assumptions–I really believe that most people are well intentioned and that comments are made out of concern or curiosity, not maliciousness or spite. With that said, however, be careful about vocalizing snap judgments. One afternoon I was sitting in an infusion room, surrounded by four or five other patients who were also receiving IV medication. We knew we’d be together there for a few hours, and started chatting. The rest were older, and had the same condition and medication. I was there for something completely different, and they wanted to know why I was receiving the medication I was. I answered briefly, and one woman replied by saying, “Really? That sounds bad! You look too young to have that!” and, turning to the person on her right, added, “Doesn’t she look too young to have all that? Makes me feel lucky!” Um, yes. I know she didn’t mean any harm by it, that she was probably just surprised because I had something different than the rest and because she had a daughter my age, but in the moment, it still made me feel like a freak. Clearly I wasn’t too young for it or I wouldn’t have it, and I didn’t feel especially “sick” or serious, so her emphasis on how “bad” it sounded was unnerving. I know I’ve been guilty of the same thing, because sometimes our gut reactions rush to the surface and our responses can have completely unintended consequences.

Really this all boils down to common sense, but in our more trying moments when we don’t feel well and we’re frustrated, it’s worthwhile to think about what we each bring to the patient experience.

Valentine’s Sensitivity Training

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Were it not for the steady stream of slushy rain, the flood watch, and the generally miserable weather last night I wouldn’t have considered a Valentine’s post at all. That’s how cringe-worthy I find the obligatory Valentine’s post. But we’ll return to epics floods and wild winter weather in a moment.

First, a quick update on the great plague of 2008:

I can walk. And talk. At the same time. And, without coughing till I throw up or pop blood vessels across my face that even the hardiest concealer can’t hide. This is progress, people. There’s a long way to go, to be sure, but things are more manageable.

Now, back to winter floods. Last year, February 14 fell on a wretchedly damp, raw, icy day. In fact, our city street flooded and then froze, leaving all the cars encased in a couple feet of ice for several days. I remember this vividly because the walk to the subway was an exercise in survival and cabs were nowhere to be found.

I also remember sitting on the nearly empty train car (apparently everyone else decided dinner out wasn’t worth braving this weather, but we weren’t so faint of heart) with my scarf-ed, glove-ed, wind-whipped reflection staring back at me. I was so engrossed in what I was telling my husband I didn’t notice how quiet he was. I was really excited about new research on improved diagnostic measures for PCD I’d read about earlier that day. It was technology I’d already used at my doctor’s office, but I was pleased to see its efficacy confirmed and hopeful that widespread use of it might mean easier diagnoses for other patients (PCD is notoriously hard to diagnose).

Later, as the various courses of our Valentine’s pres-fixe dinner arrived, I was still animated and excited. He was still quiet. I was oblivious, he was frustrated.

Turns out, Valentine’s Day dinner might not be the best time ever for research chat. (Did I mention the obliviousness?)

It wasn’t that he felt we talked about PCD (or any of the other conditions) too much—day to day, there really isn’t much to say. You cough, you wheeze, and with any luck you breathe okay and manage to avoid catching an infection. There’s not much riveting conversation to be had about it.

And it wasn’t that he felt the new research was scary or depressing—on the contrary, it was full of hope and promise, and intellectually he understood why it was encouraging.

This information was good stuff, right? So where was the problem?

But on a night that’s supposed to be about us, the side of medicine, however positive it was, that accompanied our meal was less than welcome.

On a night that’s supposed to be about us, PCD and all its potential, good and bad (and with progressive diseases, the long term potential for bad is certainly a legitimate issue), was also a reminder that someone he loves is sick and he can’t change that or fix it.

And when you love someone, isn’t your first instinct to take away whatever it is that causes them pain or discomfort? (And would you want a reminder, however benign, that you can’t?)

Message received. Timing is everything.

This year is different. The epics rains ended last night and today is actually sunny. We’re driving to our restaurant this year because our reservation is late and now we have a driveway, meaning we don’t need to take the subway because our car is iced in and we don’t want to circle the block till midnight looking for a space.

And I don’t happen to have any new research or facts to share, but if I did, I’d save quoting the statistics and waxing poetic about the methodology for tomorrow.

We won’t need to talk about how I feel, because he will be able to tell by my complexion and my eyes and the way I inhale when I talk exactly how I am feeling and that unspoken understanding is better than any conversation.

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.

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.

An Open Letter to Non-Coughers

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This advice column in Salon—“There’s a cougher in the office and it’s driving me mad!” gave me a lot of pause, especially since the academic year is about to begin and I will soon be sharing a very small office with several colleagues and in front of classrooms of students.

As you’ll see, the letter-writer seems to think his co-worker’s cough is due to some sort of neurosis, not a physical condition. I can’t say whether that’s fair or accurate (somehow it seems unlikely), but I can say that for people like me, persistent public coughing is as much a nuisance for us as it is for everyone else.

You see, coughing is an occupational hazard of being me.

I am famous (infamous, really) for my cough. When it is juicy and tight, people in doctors’ offices grimace at the sickening sound of congestion churning around and politely ask if I’m getting over something. Some offer thoughtful but useless cups of water, others un-subtly move seats. “I’m not contagious, I’m just being me,” I’ll say, and I’m met with confused stares. I get lots of turned heads and cool stares in movie theatres and on the subway, in stores and restaurants. I blush, knowing people inch away from me thinking I am contagious and knowing this is not unreasonable of them.

When the cough is spasmodic and choking enough to land me in the emergency room, people in the waiting room practically trip over one another trying to move away from me, something I’ve dubbed the “ER Duck-and-Run.” Someone will quickly slide a facemask over me and wheel me past the triage bays and right into the ward, and I can still feel people’s eyes on me and their apprehension enveloping me as I am wheeled away. I’m torn between wanting to reassure them I don’t have SARS or something and wanting to say “I can’t help it, stop staring at me!”

But can I really blame them?

When my cough is dry, it is a hoarse bark, the kind of nail-splitting sound that ricochets off of walls and echoes obtrusively through quiet corridors. That cough is the one people remember most. It is the cough nurses hear long before they come through the ER doors and actually see me, the cough that makes hospital roommates discretely ask for a room transfer, the cough whose grating tenor disturbs family members visiting loved ones several rooms away. It is the cough that makes me excuse myself from my writing workshops and wander through deserted hallways until I find a place far enough away to absorb its sound. It is an almost shameful fame I have acquired by proxy of this cough of mine because I do not have the power to change what is so obviously uncomfortable for other people. I do not like that feeling.

So believe me, non-coughers of the world, people like me try to hold it in. We try to stifle it until we can duck into a bathroom, we make sure our mouths are covered, we are just as put out by the constant hacking and the rib-aching choking. We don’t mean to interrupt or irritate you, and we certainly don’t mean to be such a distraction. Coughing is our survival mechanism, the process we need to move the gunk in our lungs around, so while we hate it and it often hurts and we cannot help it, we also know we need to do it.

Thank you for the cups of water, for the smiles of understanding, for not moving your seat or shooting me a look. I promise I’ll try to keep it down, okay?