Category Archives: invisible illness

Invisible Illness Week

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This week is National Invisible Illness Awareness Week.

Normally, I write lengthier posts to discuss living with invisible illness, but this year I did something more interactive. Check out my virtual conference on Pregnancy, Parenting, and Chronic Illness, which is now archived so you can watch it anytime.

Definitely check out the other speakers, too, who covered topics ranging from employment, relationships, communication, and other issues related to balancing life with invisible illness. It’s great to see some familiar faces and colleagues in the mix, and get to know other speakers and advocates, too.

Many thanks to Lisa Copen for her tireless advocacy for people with invisible and chronic illness.

Have a great week!

Brain Fog

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It was just a passing comment, something I didn’t even think about as I said it.

“I’ll take this shift now, so I’m not driving later in the afternoon.”

We were making a 10-hour drive to Virginia, and we usually trade drivers every few hours on long car rides. Late afternoon, from about 3pm-6pm, is my dead zone, so I wanted to avoid being behind the wheel on monotonous highway stretches if I could.

I am not sleepy then, per se, but I am spacey. I turn pale, I can’t focus or concentrate, I start sentences and don’t remember where I am headed with them, I make dumb mistakes and forget things. I miss turns or get lost. Everything simply drains out of me. Sometimes I start the day like that and it doesn’t go away, sometimes it’s hardly noticeable, but it’s always there.

(And it’s not the exhaustion that motherhood and sleep deprivation cause, though I am the first to admit that the intense sleep deprivation I’ve had the past two years juggling parenting, working, and writing a book has made it much, much worse.)

Brain fog. It’s not so incapacitating that I don’t usually just push through it—really, at that time of day, what other choice is there? I’m in the classroom then, or playing with my daughter, or cooking dinner or going to a playdate or having chest PT. I grab a coffee, drink some water, and wait to get my second wind later in the evening.

It is present enough that it automatically factored into our driving schedule, though, and that meant something.

That passing remark was probably the first direct comment about it I’d made in months, if not years, beyond the simple “yes” I reply when my husband looks at my face and says “You’re off, huh?”

Brain fog. Being “off.” It’s not something I talk about on this space, either. Granted, I really haven’t written about illness of any kind these days, but it just is, it is such a part of everyday life.

I am not even positive how I should attribute it: Partially, it could stem from my adrenal system, which has never been the same since my total adrenal failure several years ago. I’ve never really been the same since that happened. The chronic fatigue I’ve had since I was diagnosed in high school is another obvious culprit. Then there’s the whole breathing thing—when I’m wheezy, congested, or too “tight” it can cause me to be drained and spacey, and when I have an active infection, that obviously gets much worse.

It doesn’t really matter which condition contributes which percentage, since none of them are going anywhere. I do know I wasn’t always like this—I had acute flares with chronic fatigue, of course, but I wasn’t always this dependably and overwhelmingly out of it on a regular basis. It has crept up on me incrementally, and that small conversation about driving really made me step back and think about how long it has been.

So, brain fog. Lots of you have it, lots of conditions and medications can cause it. How does it affect your daily life? What accommodations do you make for it? And any tips beyond guzzling coffee?

Biting My Tongue

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You learn to bite your tongue when you live with illness.

After all, if you responded to each comment about how you’re too young/healthy-looking/productive, etc to be sick, you’d be on the defensive far too often. I feel like the “but you don’t look sick” phenomenon is well documented so I’m not going to drag it out further, but we’ve all been there. It’s part of life with invisible illness.

Living with rare diseases brings its own share of comments and misunderstandings, from medical professionals not recognizing your diseases at inopportune times to blanks stares and choruses of huh? when people ask about your condition.

When you live with infertility, you need to bite your tongue so hard it often feels like the sheer will power required to hold back is more than you can give. Or, you blog about the ridiculous comments and the emotional and physical turmoil anonymously. No, really. I don’t think it’s a coincidence that the majority of infertility blogs I’ve read are anonymous.

(Also not coincidental? The fact that I have never blogged about the daily grind of infertility, or the nitty-gritty specifics of our particular 4-year journey. It’s a choice we made together.)

Like chronic illness, infertility has its own set of predictable annoying comments, from the insipid, offensive “Maybe if you just relax!” to the dismissive “You can always adopt” (right, because that’s such an easy, offhanded decision for all parties involved, as I wrote about here). And these are the lesser offenses, trust me.

Not only are such comments trite and eye-roll inducing, they aren’t even logical. Right. If only we had thought to relax more. That would have solved the whole missing-cilia-in-the-reproductive-system issue precipitated by my lung disease. Heck, by that logic, if I’d booked a week or two in a tropical location or Canyon Ranch and really chilled out, maybe I could have even magically grown working cilia for my lungs, too.

The point of all of this is that combining infertility, chronic illness, rare diseases, and a high-risk pregnancy has been many wonderful, amazing things…and it’s also been an exercise in patience and self control.

I am fortunate to have a great maternal fetal medicine team and office staff who are very hands-on, supportive, and proactive. No one was that familiar with PCD, but they did their reading and extrapolated what has worked with cystic fibrosis pregnancies to tailor a plan of action for me.

When I need more emergent care than what I can get in the exam room, I am admitted to the labor and delivery floor, where an excellent staff handles pregnancy issues efficiently: women in labor, women with UTIs, women with blood pressure problems or other pregnancy-induced conditions, etc.

But handling rare diseases that require oxygen, x-rays, pulmonary consults, and assessments regarding oxygen thresholds for developing babies? That is when I don’t fit in. Some people like a challenge and dealing with novel situations; some prefer to stay in their comfort zone. Patients like me do not adhere to their comfort zones. It’s a simple fact of life with rare diseases and high-risk pregnancies.

We’ve actually heard them arguing about where I should go, with them wanting to send me to a medical floor better equipped to deal with my overall health conditions. Yet, I need fetal monitoring and the bigger issue is not my disease symptoms but how they impact my baby, which is why my doctor is adamant (and 100% correct) that I need to be on the labor and delivery floor. I try not to take it personally, but it isn’t the best feeling ever to hear people explaining why they’d rather not treat me and wishing I were someone else’s problem.

The only time I really took it personally, though, was when I was brought up for oxygen and fetal monitoring (baby was doing well, thankfully!) and my nurse that day decided to open the conversation with this gem:

“Did anyone tell you it would be adverse for you to be pregnant?” in a really judgmental, snotty tone. She could have started with “How are you feeling?” or “Hello, my name is X” or “How are your vitals?” or any number of things, but instead she made it clear to me she didn’t approve of my presence or my decisions.

I was livid.

I thought of the years (years!) we put into this decision—the consults, the second, third, fourth opinions, the sacrifices, the challenges, the support and encouragement we got from specialists, and even the rude, insensitive comments we got from others.

I thought of the baby thriving inside me at 32 weeks, a baby who measured ahead of the curve and looked good on the monitor even while I was truly struggling. Wasn’t her well being and health an indication our painstaking decision was sound? And wasn’t my nurse’s job to treat me, not denigrate my choices and make me feel terrible?

But it wasn’t the time to have a battle. I needed oxygen and peace, and my baby needed those things, too. “If they told me not to have a baby, I wouldn’t be pregnant. What they did tell me was that it would be high-risk and intense but that we would be able to manage it,” I told her calmly, biting my tongue.

The next time I was admitted I had a fabulous nurse, someone whose energy and enthusiasm instantly made me feel better. More than that, she was really interested in learning about PCD and my other conditions, and jumped on the computer to look information up and ask me questions. She thought it was cool to treat someone with a condition she’d never come across. She was funny, compassionate, and utterly proficient.

Out of nowhere, she turned to me and said, “I am really glad you are doing this.”

And in that moment I realized that comments and attitudes like hers transcend all the frustrating comments lobbed our way…and I was really grateful I ended up in her care that day. To her, I was a patient who needed treatment and to her, I fit in just fine.

On Invisible Illness

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This week is Invisible Awareness Week, and my post about it is a day later than I wanted it to be, which is right on par with the way things are going right now.

In fact, I wasn’t planning on just posting about it; I was scheduled to present a virtual seminar this week and due to intense schedule conflicts, and with great regret, I had to cancel. (I’m already percolating ideas for next year, so we will see…)

I’d originally planned this post to be a continuation of the conversation about illness versus disability I’ve had here on A Chronic Dose. To wit, I recently sat through an HR orientation and was pleasantly surprised by the time and attention the speaker gave to “invisible” conditions.

But that post didn’t work out as planned, either, though I do promise to return to it.

Instead, though it’s a day later than what I wanted and not neatly focused like I’d planned, all I can do is write about where I am right now.

Overwhelmed. Exhausted. Exhilarated. Optimistic. Anxious. Trying to plan for the unpredictable, willing my body to cooperate for me and not let me down, and trying to squash the voice that’s whispering Haven’t you learned anything yet?

I’m adjusting to some new work changes and client load and embracing the opportunities with gratitude. It is a precarious balance, though, and while I loathe cliché, it does seem like all it will take is one slip and everything could tumble down like a house of cards.

I mean, all I have to do is stay as healthy as possible, right? (Insert cynical tone here.)

But I cannot indulge the what-if’s and the doubts. It does me no good, and it flies in the face of my reason thoughts on hope.

And really, in the middle of a lot of changes and decisions and pressure, what this tension is about is identity. It’s an ongoing evolution; just when I think I’ve established a groove, I need to re-calibrate.

I’m a writer. I’m also a consultant, an editor, a professor, and a patient. Sometimes those roles overlap, like when I was asked to teach a course using my first book as a core text. (Talk about the personal and the professional colliding. I might have more to say about that later.) Often, the roles aren’t as blatantly converged, like when I sign on new freelance editorial clients, or when I stand in front of other classrooms and hand out syllabi and the only way anyone might know about my patient experiences would be if they Googled me. (Hello, potential Googlers!)

Clearly it’s no secret, but this part of life is something I leave outside the classroom and client conversations. This division is frenetic, but necessary.

I thought about how I wanted to be identified by others (which of course is much more about how I want to see myself), and the whole notion of public versus private while I waited for my new physical therapist to arrive last night.

My normal therapist is away, and I haven’t had anyone besides him for six years. (Yes, I am spoiled.) Having a health care provider visit your house is such a different experience than going to a hospital for treatment. A complete stranger comes into your living room, performs a rather physical treatment on sensitive body parts, and is witness to all minutiae and vulnerabilities of private life: the mail on the front table, the barking dogs, what you’re making for dinner, and often, what you look like in pre-dawn hours when your glasses are still on and your pajamas don’t match and you reach for the spit cup.

“So how was your day?” she asked when we were settled into position, as if we were picking up from an earlier conversation. Because you know, that’s what you do when someone you’ve known for about 90 seconds is thumping your chest and it’s dinner time and your dogs are slamming their bones on the hardwood floor, begging for attention.

“Long but productive,” I said. And from there we talked about where she lived and how I worked near there. We talked about writing and teaching and graduate school, and we talked about rescue dogs and traffic and commuting.

And even though she was there because I have PCD and bronchiectasis and I was literally choking in phlegm before she arrived, it didn’t really come up.

It wasn’t that my illnesses were invisible (um, hello hacking cough and vigorous clapping) but they were not defining.

The point of Invisible Illness Week is to spread awareness to others. This week, I think I was the one who needed to appreciate that sometimes the push and pull, the tension between being a patient and being a person, the re-calibrating of roles—it all settles out.

One day at a time.

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.

Dissecting a Diagnosis

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Since my presentation on employment and young adults at DePaul a few weeks ago, I’ve been thinking a lot about diagnosis. During the Q&A, we talked about whether there was any way around the almost myopic focus on the condition and symptoms new patients often experience during and right after diagnosis.

I considered that question for several days after I answered it (in short, it is a life-altering experience so in the beginning, it seems natural to me that it would consume a lot of emotion). I’m not one to start constructing categories for groups of patients, since the universality of the chronic illness experience is something I feel strongly about, but I have always had one major distinction in mind: patients who have been sick their whole lives, and patients who were healthy adults before they were patients with chronic illness.

I think that distinction is important, and that’s why I tried to include patients from both camps in my book. Each group has its own unique challenges: people like me never have to go through that huge transition from “before” and “after” that formerly healthy people do. We do not have to grieve for what used to be, or mourn for the healthier, more dependable bodies we used to have.

(Not that we don’t have our own set of losses to deal with; we do.)

It’s a question that seems to be popping up on blogs and in discussions a lot lately: Which is better, to have known healthy and a “before” or to have never known a “before?”

All I can say is that this is my normal, so I don’t miss what I never had. Nor do I really spend too much time thinking about what it would be like to have a different experience, to envision my life minus the major medical calamities and minor comical indignities.

But lately I’ve realized there is more to it than simply healthy versus sick, or before versus after, and it relates to the process of diagnosis. True, I will never share the same shock and transition that once healthy people do when they become sick, but I can commiserate with the “before” and “after” of getting a diagnosis. An accurate one, I mean.

Sure, I’ve been sick since my first auspicious breath of air (hello collapsed lungs and pneumonia) but for the majority of my twenty-nine years, only some of what is wrong with me was diagnosed and treated correctly. I know what it’s like to have doctors assume you must not be following their directions if you are not getting better, and I know what it’s like to finally get a diagnosis that matches your experiences and symptoms, that takes all the complications and contradictions and makes sense of them. As I’ve written before, when the explanation of illness matches the experience of illness, it’s a good thing.

Last fall, I asked you about the semantics of illness, where I made distinctions between the biological aspects of disease and the patient’s subjective experience of living with illness. As I wrote in the follow-up on language and the patient experience, having PCD and bronchiectasis did not make the actual symptoms I’d lived with forever different; it just made them more understood.

Which leads me to my final point—I realize it’s been a circuitous route this time. (Honestly, my propensity to ramble is directly related to my caffeine intake, and the filter in the coffee pot has been broken all week. Less coffee=more words.)

Where does all this leave the people who live with symptoms but have not received a diagnosis? If a label doesn’t change the course of treatment, perhaps it’s not as big a deal. But what if it would change it, the way it changed mine? And more compellingly, does it change the way the external world—from doctors and nurses to employers to friends and family—responds when the patient can give a concrete name or label?

If it does, then the real question is this: why are we so intolerant of ambiguity?

The Words We Use: Language and the Patient Experience

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So ever since my post for Invisible Illness Week last week, I’ve been thinking a lot about words. Not just any words, but the words involved in the naming, labeling, understanding, and defining of the patient experience:

Illness. Disease. Condition.

When I was first diagnosed with PCD a few years ago, in some ways my world was now divided into a “before” and “after”—for someone who has been sick since birth, this was certainly a novelty. The disease name took all my symptoms, surgeries, and various other complications and wrapped them up into a neat package. As I wrote in Life Disrupted, for the first time, my disease label actually reflected my experiences.

This didn’t mean my physical symptoms were any different after I had a label for them, but they made more sense. I know for patients who have struggled with diagnosis for years, finally having a name for their symptoms can be incredibly validating. It also confers membership in a community of patients with the same symptoms and struggles, which, given the isolating nature of some chronic illnesses, is important.

My new label also meant a huge difference in my quality of life and treatments. After all, if you know what it wrong, you can then learn what you can do to help treat it and perhaps even prevent progression.

It’s not a conscious decision, but I’ve never used the term “chronic disease” when speaking about health situations. I’ve always said I have chronic illnesses. Again, this was never a deliberate choice of words, but in David B Morris’s >Illness and Culture in the Postmodern Age, the author makes a distinction I’ve found really interesting, and related to this: disease is the stuff of doctors, researchers, and objective data and test results, while illness reflects the subjective experience of the patient who lives with symptoms.

This distinction also makes a lot of sense to me. While I think of PCD as a disease, something with a specified symptoms and diagnostic criteria, I think of my experience with PDC (and bronchiectasis, etc) as something entirely different. The disease is a definition or explanation, something removed from my identity as many things, one of which happens to include the word “patient.”

On the one hand, I think this use of the term “illness” can be productive, because it introduces the person into the scientific classification of symptoms, and it inevitably factors in the many aspects our lives impacted by our health—family roles, employment roles, etc. But I know there are patients who consciously choose to say they have a “chronic condition” over the term “chronic illness,” and I find that equally interesting. Is it because “illness” conveys something weak or something permanent, while the more neutral term “condition” connotes something temporary and just that, neutral?

And of course, if we’re going to parse out the semantic of illness and disease further, there’s the word “chronic” itself. As researchers and patients alike have pointed out, there certainly aren’t a lot of positive implications associated with the word “chronic.” Think about it—people don’t say they’re chronically happy, or chronically hopeful, or chronically joyful. They just areBut you do hear things like “chronically depressed” or “chronically unemployed,” etc.

But taken at its fundamental definition, the word “chronic” absolutely fits in with living with things that are treatable, not curable. They will always be there, but some periods they will flare or be more pronounced. In my case, there will never be a day I don’t have PCD (or any of my other problems) but that doesn’t mean they’re pronounced or problematic all of the time. It’s the intermittent nature that makes the term applicable. (Granted, progressive diseases mean that ratio of pronounced versus negligible changes, but still.)

Anyway, what I’m interested the most in all of this are your thoughts. Do you use disease, illness, and condition interchangeably, or do you have a preference? If so, why?

Virtual Conference for Invisible Illness Week

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Just a quick reminder that as part of Invisible Illness Week I will be holding a virtual conference on Blog Talk Radio on Friday, September 12 at 3pm Pacific time. The topic is “Friendship, Dating and Marriage: Can You Keep It All Together When You’re Young and Chronically Ill?”

Directions for how to listen to the presentation online and how to call in and ask questions can be found right here. I hope many of you will call in and make this conversation more dynamic!!

Lastly, because I can’t just leave you without any good reading material, check out this Boston Globe article on a new study that shows numbers dwindling for primary care doctors. One of the major reasons cited? The strain of chronic disease patients.

The Invisible Illness Week Post: What’s in a Word?

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I’m happy to participate in Invisible Illness Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)

After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.

Though the absence of outward physical manifestation of illness in no way negates the existence of illness, the world doesn’t always work like that, and that’s where the stories so universal to the invisible illness experience originate: the stares and comments when a “healthy-looking” person uses a handicapped placard; the judgments and whispers in stores or other public places when people do not move as quickly or efficiently as they look like they should be able to; the insinuations patients are lazy or malingering because they are not cured and “don’t look sick.”

This is the part of invisible illness that is challenging, these preconceived benchmarks of what healthy and sick look like that are impossible to meet, these public expectations that are harder to reach when many physical complications stand in the way. I know I’ve felt uncomfortable when I’ve had to walk slowly because of adrenal fatigue or when I’ve had to take the elevator up one floor when I’ve had a respiratory infection and haven’t been able to move enough air to climb stairs. I don’t want people to think I am simply out of shape, or too lazy to walk up a flight of stairs.

(And yet I assume they are noticing or caring, so really, whose problem is it?)

I wish it didn’t matter so much what the average stranger, however misguided or misinformed or plain old misanthropic, thinks or assumes, but it does. Who wants to be judged, criticized, or somehow invalidated?

But there’s more this invisible illness phenomenon, something I touched on in last year’s post on Seeing the Scope of Invisible Illness–the cloak of invisibility has its benefits. It gives us a space to identify ourselves as something other than patients, a space where we don’t have to discuss, defend, or define conditions. We can be just like everyone else, if even for a brief spell. We can keep our problems and complications private.

I guess the timing of this post on invisible illness is particularly compelling for me because I’m caught in between the seen and unseen. I’m temporarily wearing monitors and devices that are very much visible, that lay bare to everyone around me what’s going on inside of me whether I like it or not—and it’s a definite “not.”

(And yet I am assuming they are noticing or caring, so really, whose problem is it?)

It’s the same feeling I’ve had when being wheeled onto an ambulance in front of a college dorm or being pushed through an airport in a wheelchair. Feeling that vulnerable and exposed is, in my experience, just as uncomfortable as feeling criticized or judged for not “looking” sick enough.

So in the end, parsing out the implications of invisible illness leads me to another, equally powerful word:

Understanding.

It’s what we need from others when our reality doesn’t match their assumptions, and it’s what we need to remember to extend even when in short supply because, as we know too well, you never know the truth of someone’s situation from a sidelong glance.