Category Archives: Chronic Illness

On Anniversaries; or, What is Necessary

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Last spring and summer, before things got more complicated, every time I walked by the baby’s room I would stop and enter. I’d walk in and touch something—the side of the crib, a stack of bibs that had been washed and folded, the small pink bunny we bought at the hospital gift shop the day we found out she was a girl. The room gets a ton of sunlight all afternoon, and that’s always how it seemed to me—quiet, peaceful, and full of streaming light.

While an amazing, incredible journey, pregnancy wasn’t always comfortable for me, and I am not talking about all the physical stuff of a high-risk pregnancy. I was awkward in maternity clothing stores, awkward about letting people know I was pregnant (if waiting 16 weeks to tell people beyond the inner sanctum is any indication), awkward even saying the words “I am pregnant.”

It wasn’t because I was waiting for something bad to happen, for that other shoe to drop, or anything like that. It was more that it was hard to believe it was really happening, and if I said it out loud, if it became so very real, I would wake up from the dream. So it was a learning curve, letting go of this safely guarded secret, meshing the real world and all the risks and variables with the dream world.

But her room was different. I know many people, those who have been through infertility and loss and those who haven’t, who wait on decorating and setting up just in case, and I totally get it. I was convinced I’d be that person, too. Instead, there was something comforting about getting it ready early, about the trappings of a baby having a place in our home. (Plus, I had a feeling the third trimester would be…challenging, so I wanted to be prepared).

Her room was my compass, my private act of rebellion and hope. Every time I went in there I smiled, every time I rocked in her glider I felt peace. I needed it to remind me everything would be okay, and to remind me it was not just okay to have hope, it was intrinsic to this whole experience.

Now, I walk into her room and there is a peaceful, sleeping baby or a smiling, wriggling baby read to play. The sunlight streams in just like it did last year and I catch my breath as the two worlds collide, the world of waiting and the world of living, and I exhale.

All of this is on my mind a lot as we near the anniversary of the call that changed so much. Of course I know from firsthand experience that such calls do not just happen at 3am; they happen as you are making dinner quite often, they happen as you’re doing errands, they happen as you are about to have lunch, like this one did. We’ve had lots of calls, but this one I remember in visceral detail.

It was this time last year I learned that it is possible to have your heart literally feel like it will stop beating from fear at the same time it wants to explode into a million pieces with happiness. That grief and sadness and joy and gratitude can co-exist—not easily or gracefully, but they can, and we need them to. Becoming a mother will be forever linked with being my mother’s daughter, and there is a lot to be said for that.

Sometimes, it is hard to believe how much has happened in one year, how much life has changed from last summer to this. It is not just good to be hopeful, but it is a necessary part of being.

Five Things on a Friday

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So, I blinked and weeks have passed since my last post. The usual spin cycle—mothering, writing, being sick, tending to a sick baby—is the culprit but we’re all on the mend and enjoying summer. (The parks! The playgrounds! The beach! So many new things for little eyes and hands to explore…)

(And, somehow, the chapters are slowly coming together. Time is not my friend these days, but such is life, right? There is nothing as clarifying as a deadline, there is nothing as clarifying as a deadline…)

With lots to write but scattered focus, here we go—five things I’m grateful for this Friday.

1.Friends. I know that might sound trite, because really I’m always grateful for my friends, but more specifically, I am grateful for the chance to see my friends. Between a hectic schedule, illness, and in a lot of cases, geography, I don’t get to see a lot of my long-time good friends as often as I’d like. Recently we all coordinated schedules and met up for a quick weekend in Washington, DC, home to our alma mater, Georgetown. Husbands came to help with babies, babies met friends from afar, and it was great. I’ve had to miss the majority of weddings, reunions, trips, and other events over the years because of being sick, and it was so nice to have everything work out this time. (Special thanks to T for being an amazing hostess!)

2.Flying. Again, let me be more specific—I am grateful I was able to fly. It has been years since I’ve been on a plane, between the usual illnesses, plus the high-risk pregnancy and germ lockdown, bed rest and then having a newborn and young infant with some health problems. And while I always come home from a plane trip sick, it was so worth it to get a brief change of pace. (Plus, Baby Girl’s first flight went so well—she smiled away and then slept the entire flight, both ways.)

3. Food. Specifically, feeding Baby Girl food. When she turned six months old, we started solid foods and a sippy cup, expecting both to take awhile to catch on. However, within a couple weeks, she was on to three solid meals a day and using the sippy cup exclusively, save for one bottle at bedtime. She had feeding problems as a newborn, has reflux, and has multiple food allergies and intolerances at this point (hoping she outgrows them all!) so it is amazing to see her enjoy eating so much and thriving. She is small for her age but one look at her chubby cheeks and thighs and it’s clear she is doing great. Everything we’ve tried with her she loves, from chickpeas, spinach, and broccoli pieces to steak, sweet potatoes, and rotisserie chicken (her favorite!) (Next up? Quinoa!) We’ve made all of her food from the start, which is super easy and a lot of fun, and since she’s been feeding herself with her pincer grasp for so long, she can pretty much try anything at this point. If she ends up with long-term food allergies or is celiac, I want her to know so many good foods exist and I don’t ever want her to feel hemmed in by dietary restrictions. While so much can change, for now she is an adventurous and happy eater, and I hope it lasts.

4. Flexibility. I admit, the spring semester kind of chewed me up and spit me out. There were too many major things to juggle, and my body paid the price. I love what I do and really enjoy my students, but I have never been more grateful for the summer break than I am this year. Working on my book full-time and having the flexibility with my daytime hours to do a lot more with my daughter is wonderful. It’s an iteration of the semester: if I am willing to do a lot of work late at night, early in the day, and any spare time, I get to do so much more with my girl—and while the book situation is pretty intense right now, we are having so much fun, and I am really looking forward to the rest of summer and watching her grow and discover new things.

5.Facebook. There are a lot of things I don’t like about FB and I have my personal page fairly limited in terms of access, but there is a lot I find valuable, too. My book page is a good way to connect with readers and have an ongoing conversation, which keeps things dynamic and relevant. I like the power of FB to harness people together for a cause, which is what has it on my bullet list today. My husband’s company, The Well Fed Dog, is supporting dogs/animals displaced by the recent tornadoes in our home state of Massachusetts. For every new FB member who joins/likes the Well Fed Dog Facebook page, we’re donating to the Dakin Valley Humane Society, which suffered significant damage in the storms. So if you’re on FB, click on the page and help the WFD assist these animals in need!

And, because it makes me smile and it’s Friday so why not smile, a recent pic of Baby Girl:

On Working From Home

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So in my recent post on working with chronic illness, I mentioned a forthcoming piece on working from home.

Now, before I launch into my experiences with and take on working from home, I should point out some illness-specific benefits: There is more flexibility to schedule doctor appointments, tests, and daily chest physiotherapy. On “bad” days I can still work, even if means moving my home office to the couch and typing over the nebulizer mask. On days when other conditions flare and I can’t move my legs well (for example) I don’t have to worry about how I will get from point A to point B. Less commuting on public transportation and less time in crowded places during the peak cold/flu season means less opportunity for me to catch things that leave much sicker for longer than the average person.

And of course, when I am in the hospital, my laptop and wireless access mean I can keep on working.

I must admit that there are a lot of positives in working from home when trying to manage a career and chronic illness. It doesn’t mean working less—in fact, one of the biggest challenges is that there is little separation from work life and regular life—it just means it is a little easier to work better when my body gets in my way.

I’ve worked from home in some way or another for nine years now, whether it’s a couple days a week during the semester or full-time doing freelance work and writing books. This Boston Globe piece on working from home did point out some relevant challenges and opportunities of working home. I particularly enjoyed the response to the claim that it is easy to take care of children and get work done—sure, bring your child to your office sometime and see how much work you get done!

Anyway, I think the key to working from home successfully is knowing your strengths and weaknesses and finding a routine that works for you. It’s not for everyone. It can be lonely and isolating. It can be really hard to focus and self-motivate. It can completely usurp your home/family balance. Some people get strength from social interaction and do best when they draw from the energy of a group. Some people need regular check-ins and accountability for best results. The point is, know the conditions that allow you to succeed.

For me, it doesn’t matter how sick I feel or how late I was up working or with the baby; I sit down at my desk in my home office every morning, coffee in hand, and go through my inbox/headlines/social media check-in. I break for a brief lunch. I don’t make or take personal calls during my designated work hours: those hours are scarce and precious to me, and I try to make the most of them. Sometimes I need a change of scenery and go to a coffee shop; other times I know I just need to plow through it without any distractions or stepping away from my computer. I make to-do lists every night before I go to bed.

Oh, and before my daughter was even born I knew I wasn’t going to try a full-time course load with a full-time writing career, a large part of which happens from my home office, without some child care. As I mentioned before, even if it means working many hours late at night and very early, my time with her is about her, and when I am working, I just want to focus so I can get it done more efficiently and therefore, have more quality time with my family.

Boundaries are also fundamental. I think many of us, whether we work from home or not, struggle with knowing when to “shut off” work, and this is especially true when our office is in our home and our deadlines are often self-imposed. It’s no secret that balance is hard for me, and I do think working from home exacerbates that.

But creating our own boundaries is just one part of it. The other part is reinforcing those boundaries with the people in our lives. The expectation we can chat whenever, we can make plans any time of day, etc simply because we are working from home can get frustrating, and if I don’t hold up those boundaries (nicely) I can’t expect others to respect them, either.

Sometimes I feel there is an inherent value judgment that other people’s time is more valuable than mine if they happen to work in a traditional office setting and I am at home, that my time is more expendable.

And in a way, it is—that’s both the challenge of it. If I need to or want to, I can step away more easily. I can take my daughter to music class, or go to another doctor’s appointment, etc and make up the time later in the day or the week (or weekend). I don’t work from home a large part of the time for this—it just so happens that writing, editing, being a professor, and consulting lend themselves to a non-traditional work situation—but it is a major positive that is more important than ever now that I have a child. Yet if I am not vigilant and disciplined, flexibility could become a detriment.

Lastly, working from home leaves me in a weird place when it comes to play dates, making friends with other mothers, etc. I am not away at an office every day of the week (during the semester, 2-3), but I am not at SAHM, either. I don’t make plans for evenings often, even on weekends, because I am usually trying to keep my head above water, work-wise.

These are not complaints, merely observations. I’ve made decisions to bring me to this point, ones I hope set me up for the most success in terms of my health, my careers, and my ability to be the mother I want to be. Like everything, there are compromises but for me and in my personal set of circumstances, the compromises are worth it.

Anyone with tips or observations to share? If you’ve made the switch to working from home, are you glad you did? Did you do it for your health?

On Being a (Chronically Ill) Mother

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The next installment of the ChronicBabe blog carnival is all about motherhood and chronic illness, and given my recent post on trying to balance work, parenting, and chronic illness, this theme is certainly on my mind these days.

I’m working on a piece about Mother’s Day, infertility, and parenting, (and hey, did you know this week is National Infertility Awareness Week?) but I think it’s important to look specifically at the chronic illness aspect of things, too…and as the daughter of a chronically ill person, a patient myself, and the mother of a child with some health issues, I definitely have fodder.

The biggest thing that living with chronic illness has reinforced in my parenting is this: trusting my instincts. Our instincts. We bought all sorts of books and guides before she was born, but once she arrived, we quickly realized that getting to know her and paying attention to her cues was the best guide of all. We trusted her to let us know what she needed, and trusted our own intuition, too.

As a rare disease patient with a history of missed diagnoses, I have learned to be an advocate—to speak up when information is incorrect, to ask questions even when it is uncomfortable or awkward, to make sure my voice and my knowledge of my body and my symptoms are part of the dialogue.

As a parent, my job is to advocate for my daughter and to always work for what’s in her best interest. From firing her pediatrician when he continued to ignore her worsening symptoms to fine-tuning the balance between keeping her away from sick crowds during the winter season since she was very susceptible and also allowing her to socialize (she’s an outgoing girl!), I have more confidence saying “I know what is right for my kid”—and, more importantly, “I know when something is not right for my kid”—than I might have had I not lived through 30 years of illness.

I also think we are both more risk-tolerant than we might have been otherwise, especially me. She was such a tough little survivor all the way through this long journey of ours, and through her own health problems (which are under nice control these days), that it is easier for me to let go of fears and anxiety. I joke when I say it, but there is a lot of truth to the fact that if she could survive 37 weeks inside this body of mine, she can handle what the outside world throws at her.

It’s so easy to get bogged down in the labels and categories that come along with becoming parents (and I don’t mean Bugaboo versus Uppababy): Are you an attachment parent? A co-sleeper, a CIO-er, an E.A.S.Y. parent? Are you a breast feeding mama? Do you give your baby a pacifier, do you wear your baby, do you swaddle? Are you a working mom, a SAHM mom, or some variation of the two?

Parenting is never as black and white as these choices. They might contribute to the much larger picture of who we are as parents, but they are only as defining or absolute as we allow them to be. At least that’s how I feel, and how I feel about the possible implications of being a chronically ill mother. Or rather, a mother who happens to have chronic illness. Just as illness was never what I wanted to define my relationships or my career, it certainly isn’t what I want as a defining element of my daughter’s life.

And it isn’t.

But some days, making sure that isn’t the case takes more work than others.

There have been days where I have been really sick and run down and couldn’t imagine getting out of bed, but a certain squealing, chuckling little girl needed to eat whether I felt well or not. There have been days, especially earlier on, when trying to be the mother of a breastfed infant with health problems and the daughter of chronically ill parents who had their own needs left me flattened. There have been nights where, after another 18-hour day, staying up most of the night to watch her and hold her upright when she wasn’t feeling well was difficult if I wasn’t feeling well, either. But you do what you need to do in the moment and get through it, like any parent. Her needs come first.

Living with chronic illness already showed me how important it is to ask for help. Admittedly, this is much more difficult with my daughter because I want to be the one to do things for her and with her, but this is perhaps the greatest negotiation of parenting with chronic illness: I can’t be what she needs me to be if I am too sick.

It’s a line I am always balancing, and it took me many months to be able to start to make some of those choices—some days, that means she has to wait while I have my chest PT, some days her father does the morning shift, some days I abandon my word count to get some more rest so that the next day, I can give her all the energy I have.

I’ve come to see that those days where I have to shift things a bit still mean her needs come first—it’s just an alternative way of making sure she has two happy, (relatively) healthy parents who can give her what she deserves.

On Working, Parenting, and Chronic Illness (Part 1)

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This week, my spring semester ends.

And while in many ways it was a great semester (engaged, intellectually curious students, new assignments and experiments in the classroom that worked out well), I am profoundly relieved it is over.

I’ve been wanting to write a series of posts about work, parenting, and chronic illness for awhile now; a recent Boston Globe column on working from home only intensified this.

I knew back in December that finding balance would be my main challenge and while I might be self-aware enough to anticipate this, I wasn’t self-aware enough to actually do something about it in time.

During the academic year, I teach a full-time course load, plus other administrative and professional development projects and meetings. I’m also a writer with an impending deadline for an incredibly research-intensive beast of a book. Both are full-time responsibilities.

Like anything, there are compromises and trade-offs to this type of career path, one that is not a traditional office job. I work from home a couple days a week during the year, and work from home full time during summer months. I’ll discuss the pros and cons of working from home in an upcoming post, but the number one benefit of my current career is that it means more time with my daughter than I could ever have in an office job.

(Plus, the health insurance I provide for my family is awesome. Really and truly.)

After all, after working for almost five years and risking my life to have her, I don’t want to miss a thing. This was the promise I made to her and to myself when I went back to work: when I am with her, she gets all of me. No laptop, no hastily typed work e-mails, no frantic checking of the inbox for replies from editors or interviewees or students. I don’t want to be half-present with her and half-present with the other people in my life who need me.

She deserves more than that—and so do my students, and so does my book and all the people who have given me their time and insights during the writing/research process.

Some days (the best days), I am mainly with her. Other days, like when I am on campus, I make sure the mornings and the later afternoons and early evenings are all about her. Luckily, we have had family who have been able to help with watching her some of the time, and a wonderful caregiver some of the time, and the more flexible nature of my work demands means that most of the time, I spend a lot of time with her and make up what I need to do for work at other times in the day. I know we’re fortunate to have help, and I know not everyone does.

In terms of being with her and watching her grow from a precocious 4-month-old just starting to sit on her own to a chatty, giggly little girl who feeds herself and loves turning the pages of her books, in terms of being an active, engaged participant in her everyday life and routines, I have no regrets. I never felt my work took away from her, or took me too far away from her. In this way, my semester was a success.

But, a full-time workload plus a book plus daily chest PT (and all of the logistics of her health needs and doctor appointments) and everything else means that making up what I need to do was pretty challenging. For a lot of the semester, it meant staying up very, very late and getting up hours before my daughter woke up to get stuff done. It meant working almost every single Friday and Saturday night and during weekend mornings and naptimes. And all of that is clearly worth it, because it means I get to pick her up from her crib when she is all smiley and up from her nap, or take her to all her doctor appointments, or watch her devour her sweet potatoes or gluten-free snacks.

However, a schedule like that is not sustainable, not for healthy people and certainly not for people with chronic illness. (Oh, hey, and it goes against practically everything I’ve written about here and in my book, too.) It’s almost May, and the infection I caught at Christmas is still recycling itself through my lungs and upper respiratory tract and causing problems. By February, I started noticing my lung capacity was limited enough that I had a hard time walking through campus and talking at the same time. By March, my adrenals started acting up and some days, my arms and legs were so heavy and concrete-laden I needed a ride to and from work because I couldn’t get myself from my parking garage to my building on the other side of campus.

I realized a bit late in the game that all of this hard work would be for naught if it meant I was too sick to be what my daughter needs from me. Duh, right? My health affects her. What good are the carefully preserved hours with her if I can’t lift her, or take her places, or play games with her?

I’d like to say I had this huge revelation and made all sorts of drastic changes, but responsibilities are what they are. I did need to prioritize even further, though, and that meant letting go of some expectations of how much research and writing I could do during the semester. I don’t get up well before dawn anymore. I try not to schedule activities on both weekend days. I tell myself regularly (no really, I do—I find I have to repeat it to myself) “all you can do is what you can do” and what I can’t get done I leave behind me when I go to bed at night.

My husband, a fantastic father and a wonderful support system, now has a little more flexibility with his time since starting his own business, and that’s made a huge difference. (Even though he’s pulling very long hours himself, it’s amazing how much more time he has to see her now that he doesn’t have an hour-plus commute on the T every day and can walk to his nearby office.)

In the end, I made it. I made certain decisions that upheld certain priorities and I made it through. We made it. Since I don’t plan on ever having a baby and an enormous book due at the same time again, I do think life will be more manageable from here on in. This semester, my body paid some of the price but that means my daughter and my students did not. The beauty of teaching is that next semester, I can try it all over again and hope to do much better at this whole balance thing.

(And between now and then, I’ll finish that book. There’s nothing as clarifying as a deadline…right?)

I know so many of you out there have done this whole working-parenting-being sick juggling act much longer than I have. Any words of wisdom (or, moments of defeat) to share?

Moments

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I do plan to post something coherent about work, chronic illness, and parenting very soon, but right now, while I am limping across the finish line of the semester, indulge me in some more unstructured thoughts on being a parent.

Time. As I taped my daughter’s Easter picture to the refrigerator this week, I realized a few things: this was the first time my own child’s holiday picture kept her cousins’ pictures company up there; this time last year, we already had three (of many) ultrasound pictures up there to greet us every time we went into the kitchen; it was this week last year that I finally went public about being pregnant. A year ago April 16, I felt my daughter move for the first time, and this year, almost to the day, she cut her first tooth and balanced on her own standing up for a few seconds. It is hard to wrap my head around everything that has changed in this past amazing and challenging year.

Relief. I was back at my (our) hospital for an appointment of my own this week. I’ve done my very best to avoid going back there, having spent far too much time there during the pregnancy. Anyway, it is such a different experience evaluating pulse oximeter results and medications without worrying about the impact of the numbers on a growing baby. Knowing her welfare is no longer tied so wholly and viscerally to my own health is reassuring, yet the relationship between my health and what is best for her is still a regular negotiation: to be the best mother I can be for her, I need to feel as well as I can. (See also: upcoming post on balance….)

Gratitude. “Every morning is kind of like Christmas morning.” We agreed about this the other night. It was almost 1 am and we’d both had a very long week, but none of that mattered, or matters. Knowing there is a wriggling, giggling little girl waiting for us every morning often makes it hard to sleep.

And, in lighter terms…
Humility. I was getting a bit cocky last weekend. In one day, I’d managed the logistics of swimming class, a play date, and a birthday party with nap time and meals (and final papers! And work deadlines! And a nasty, plague-like virus thing, oh my!) and everyone was intact and smiling. Clearly, I was too confident.

As I went to fold up the new stroller and head to our final destination, I could not figure it out. Like, 10 minutes into it, sweating and exasperated, I still couldn’t fold it up. I pulled tabs, I pushed bars, I moved wheels. I may have sworn a few times, and I may have even tried shoving the whole thing in the back still upright. With the guy who was waiting for my spot impervious to my motions to move on, I got more flustered and more inept. Eventually, he got out of his car to help me and he couldn’t do it either, but that didn’t make me feel better because I’d had lessons. Fearing a situation just like this, my husband, who is used to the manifestations of my spatial relations problem, had walked me through it several times. Thankfully, a second passer-by, the mother of twins, hopped out of her car and came to our rescue.

So a good fifteen minutes after I buckled my daughter into her car seat and tried to leave the parking garage, I was ready to go. The only upside is that this time, I hadn’t gotten lost actually getting to my car, which is a routine occurrence in parking garages.

So there’s that.

Let’s hope she gets her spatial abilities from her father….

The Stigma of Illness: An Article, An Interview

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As a patient, it is always pretty neat to see health-related issues I care about handled in the mainstream media. And when they are handled well? When there is research and depth and narrative all packaged in an accessible yet thoughtful way? That makes me smile.

As a writer, it is a whole different kind of experience to see issues I am so heavily invested in researching and writing appear in popular mainstream media. As many of you know, I am publishing a second book, and it is a social history of modern chronic disease. It is a project that involves an extraordinary amount of research, reading, and interviewing, and interviews aside, most of it takes place by myself, often late and night and before the sun rises. It is an exciting endeavor, but sometimes an isolating one.

So when I read an advance copy of “The Stigma of Illness” that appears in the May Issue of Woman’s Day (on newsstands right now), I was excited. The stigma around illness, including issues of gender, socioeconomics, and politics, is, quite obviously, a major element of the book.

And when I saw research that I’ve used in my own work for several years and discussion of ideas I’ve carried with me everywhere I go for such a long time, I was hooked. People are talking about this stuff. People realize stigma matters.

The article looks at the judgments and blame often placed on patients, particularly those who live with conditions where individual behavior often plays a role in transmission or severity of illness. Individual responsibility for behavior versus genetics or random chance is a comparison I find fascinating, and the inherent (and harmful) hierarchy of patients it sets up is one the most compelling and thorny issues in modern chronic illness.

“For years, social scientists such as Gregory Herek, PhD, a professor of psychology at the University of California-Davis, have been trying to unravel why certain conditions seem to carry “marks of dishonor,” writes article author Joan Raymond. “Their conclusion: Whenever there’s a widespread perception that something can be attributed to personal weakness or poor lifestyle or moral choices, that disease is going to be stigmatized.”

So why such an article right now? Amy Brightfield, a health editor at Woman’s Day I spoke with yesterday, acknowledges these issues have always been in existence, but play an even larger role in public discourse right now, especially when it comes to health care reform and health insurance coverage.

“People talking more and more about what should and shouldn’t be covered…illnesses that tend to get stigmatized don’t tend to get covered as well,” she says. She points to mental health problems a prime example. “You have to prove some physical concrete toll it is taking, which why it is so hard to get coverage for mental health because of the stigma.”

With profiles of three women living with some of the most heavily stigmatized conditions—AIDS, lung cancer, and bipolar disorder—the article does a good job of laying bare the tension that exists when morals, person decision-making, or sanity are questioned as a result of physical illness. The non-smoker who contracted lung cancer anyway and the AIDS patient who contracted the virus in a monogamous, heterosexual relationship profiled in the article know firsthand how painful judgments and assumptions about lifestyle and worth can be.

And of course these are just a few of the illnesses where individual responsibility for behavior is called into question. Obesity and its attendant complications are at the top of the list, too. Brightfield, who is working on a story right now about different communities’ initiatives to reduce obesity and conditions related to it, says personal responsibility is only part of a more complex problem. It’s one thing to say people should eat right and get more exercise, but if you live in an area where fresh produce is hard to find, if you can’t afford a gym membership, can’t walk to school or work, etc, it isn’t as easy or obvious.

“The modern world is not conducive to exercise and making healthy choices about food,” she says.

Turning back to the women profiled about stigma, it is clear that gender often underlies judgments about illness, particularly since more of the nebulous conditions like Chronic Fatigue Syndrome or fibromyalgia, which are harder to isolate biological causes for, affect more women than men. Given the historical context of “hysterical illness” and the huge differences in acknowledging and treating chronic pain in men versus women, there is clearly a lot more to be said about all of this (trust me, I’m working on it!)

Still, as Brightfield points out, and as many patients I’ve spoken to concur, stigma is not gender-specific. Even if we just look at men living with AIDS or lung cancer, it is clear that gender may be a dominant force but it is not always a defining force.

Stigma is equal-opportunity. And because we’re all living with a constellation of hereditary, environmental, socioeconomic, and other lifestyle factors, it’s not our place to assume or blame.

“Don’t judge anyone because they are sick….that’s why we did the story, to show that people get stigmatized…in the illnesses that we featured here, you don’t know the whole picture medically because you are not the doctor,” says Brightfield.

How many times have you felt blamed or judged for your illnesses, whether implicitly or explicitly? Was it by a doctor, a friend or loved one, or even a total stranger?

To read more about this, and perhaps to empathize and commiserate with the brave women featured in the article, make sure you check out the latest issue of Woman’s Day.

IRL: The Rare Disease Edition

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So, last weekend I met and had brunch with a fellow PCD patient. (Hello, L, if you are reading this!)

That sentence is actually pretty monumental. You see, it is the first time I have ever met someone with PCD (and bronchiectasis) in person. And, for all I know, it could be the last.

(There was that one time a young PCDer happened upon a book reading I was doing for Life Disrupted totally by coincidence, but we were both a little under the weather and therefore could not come in contact with each other, so I saw him from afar but did not meet him.)

It is a reality of life with rare diseases that we can go years, decades, even lifetimes, without meeting other patients in person. When I was first correctly diagnosed, I can’t tell you how helpful it was to know other people like me existed, and to read their stories and advice online. The impact of the Internet on the patient experience in general and the rare disease patient in particular is so important and so layered I plan to tackle it on its own and in other venues.

As you know, I am staunch believer that our experiences as patients with chronic illness unite us more than our different symptoms and diagnoses, and I will always believe that. At the end of the day, dealing with acceptance, control, relationships, balance, work, families, etc are universal challenges.

However, there is something so different about seeing someone in person. To drink coffee and swap stories with someone whose experience so closely mirrors your own. (In our cases, collapsed lungs and pneumonia at birth; frequent and serious infections throughout childhood and on; multiple surgeries; multiple hospitalizations; incorrect labels and diagnoses; secondary conditions like bronchiectasis and infertility; etc, etc.)

Oh, and we could cough and it was no big deal, and no asked if we needed water or were sick because everyone at the table knew that cough was as natural to us as the inhaling and exhaling everyone else does that we can never take for granted.

I don’t want to say it was validating, because I have my correct diagnoses and treatments now and am past needing validation. I think comforting is the right word, because despite technology and blogs and social media and online forums and everything else, being a patient with a disease nobody recognizes and nobody around you has can be isolating.

How many of you have felt that way?

(And I’m not talking about the health care delivery implications of people not recognizing it; I’m speaking strictly of the social and emotional aspects of living with these conditions.)

A sense of community is harder to come by when it comes to rare diseases. There are no disease awareness months, trendy wristbands, walk-a-thons, etc. Thankfully we have the umbrella National Organization for Rare Disorders, and numerous disease-specific work tirelessly to advocate and research for new medications and treatments.

But day to day, in the shuffle of work and doctor appointments and daily chest PT, in the managing of all the other conditions that take second seat to how well can I breathe today, it does feel a bit lonely.

I’ve been thinking about community a lot these days, especially since my post on audience: the power of communities to abandon differences and unite to effect change (the disability right’s movement, for example); the power of disease-specific communities to achieve tangible results (the early HIV/AIDS movement, for example); the power social media has to create and sustain communities and disseminate knowledge (for the better and the worse.) Looking at current events in the world right now, clearly this discussion is not limited to patient communities.

Though I’ve struggled with assimilating my writing and blogging with the new communities I find myself (parenthood, working mother, mother of a patient, etc) I am getting there. And while I have a lot more to write about the points I mentioned above, on a personal level, I am trying harder to connect to the communities I dohave.

An avid reader, I’ve been terrible about commenting on blogs the past few months, and can do a lot more here, too. I’ve also updated a sorely out of date patient/medical blog roll, and added a whole new category of parenting, infertility, and adoption blogs that I read. For either category, shoot me an e-mail if I’ve missed you and shouldn’t have!

As Long as Everything’s Okay

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It’s a cold, rainy March day and I can’t help but think about this time last year. It was right around now that our basement flooded from epic rains, the infection I’d had since January got worse, and I ended up in the hospital for a few days. It was the busiest point of my semester, and it was when I tumbled down the rabbit hole of work and chronic illness.

And, I was twelve weeks pregnant when I was hospitalized and very worried about the baby, but couldn’t tell you that then.

I can’t speak for anyone but myself, but when you go through infertility and loss you don’t look too far ahead. Just let the baby get through this, I remember thinking. Let us make it to the second trimester okay.

I watched her (of course I didn’t know she was a she then) dart around the many ultrasounds I had that hospital stay, eyes glued to the screen while the medicine floor—charged with taking care of my lungs—consulted with my fetal medicine team, who were charged with keeping the baby safe and evaluating which medicines I could take.

When we were several weeks into the second trimester, and I finally came out about being pregnant, reaching viability (or, 24-25 weeks) was the next milestone. Naturally, people asked me if we had a gender preference, which we didn’t. However, people looked at me strangely when I answered “alive” as my preference, so I learned to say “as close to full-term as possible,” and had conflicted feelings about the familiar old phrase, “as long as it’s healthy.” When we had scares at 28 weeks and I went on bed rest, and more scares at 32 weeks with my lungs and 34 weeks with my lungs and pre-term labor, all we wanted was for her to be okay. Every single day she stayed on the inside was a victory for us.

And then she was born, and I could finally hold this tough little girl who did so well for so long, who thrived even when the circumstances indicated she shouldn’t have been. She was whisked away for a (very short) NICU stay, and all I could think of was, just let her be okay. I couldn’t wait to have her in my arms again.

I’ve thought a lot about the whole “as long as she’s healthy” sentiment the past few months. Thankfully her health issues are not serious, and thankfully they have not impacted her development. She’s a strong little peanut—she’s been sitting up unassisted since she was a 4.5 months old, and is ready to take off and crawl all too soon. I joke it’s from all the steroids I took during pregnancy. We call her a little toughie because she rarely complains, even when not feeling well. She’s known as the baby who loves the doctor’s office, and never stops smiling and flirting with everyone, even when they are poking, prodding, and testing her.

One of her doctors is on the same floor as the pediatric hematology/oncology clinic and there is nothing like seeing that sign to make you feel simultaneously grateful your kid is basically fine and also heartbroken for the children and parents going through so much worse.

Way back, when I was a teenager and younger adult and babies were merely hypothetical, it was so easy to focus on the things that don’t matter. I’m competitive, and admittedly I can be an intellectual snob, and I remember thinking how I’d want my kid to do well in school, to go to a prestigious college, etc, etc.

That was before. Before facing mortality more than once, before falling in love and getting married, before 4 years of infertility, before people told me I would never or should never have a child, before loss and grief and hope and joy swallowed me up all at once. It was before I saw a tiny flicker of a heart beat at 6 weeks, before the drama at 12 weeks, before finding out “it” was really “she,” before tiny kicks and punches and more hospitalizations and complications. It was before I discovered cranberry juice made her dance inside me, before I held her in my arms for the first time, before I saw my husband’s face in hers.

And of course, it was before she held my finger while eating, or started my day by squealing and laughing in her crib; before she stopped what she was doing when someone said “Mama” and stared right at me. It was before I experienced how scary it is to see your baby sick, and how reassuring her big smile could be. It was before she learned how to give hugs, and big, slobbery kisses, before I realized that her deep belly laugh could make me laugh harder than anything else, ever.

She will be six months old tomorrow, and I can’t believe that. Honestly, there are still days I am in awe this is our life. In the middle of the pregnancy chaos I wrote about taking it one day at a time to stay sane. Now, I find myself focusing on taking it one day at a time, simply so I don’t miss a minute of this amazing journey, this “after.”

If she grows up and loves school, great. If she outgrows her health issues, absolutely fantastic. But in the end, as long as she is okay, as long as she is happy and knows she is loved unconditionally, that’s all that matters. Turns out the refrain that sustained me throughout our pregnancy–just let her be okay–sustains us still.

Audience

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In my writing classes, audience is the fundamental principle we keep returning to for each assignment: Are my health sciences students writing to peers in the professional realm? To a scholarly, academic audience? To the general public, or a patient (ie, lay person) audience? Such audience analysis gives way to decisions about scope of content, vocabulary and diction, and overall tone and approach.

You need to know your audience for your message to be successful,” I hear myself saying over and over.

And yet lately, when it comes to my own writing, I seem to be so hyper-aware of audience and more specifically purpose, that it leaves me wordless. (I know!)

I’ve mentioned having trouble with balance since going back to work full time with a baby, and have also said I’m trying to get back into a groove. And while part of that does mean simply carving out the time to post with regularity, to comment on the posts I read (because I still read them—it’s something I can do one-handed while nursing), and to engage more fully in this online world, that is only part of it.

I need to find my content groove again, too. So often I have concrete ideas, ideas that won’t go away and keep percolating away until they threaten to bubble over, but then I stop short of executing them.

I want to write about aspects of parenting that are enlightening and humbling, like breastfeeding.

(But this isn’t a parenting blog, so stick with issues of parenting and chronic illness, like knowing when to fire a pediatrician, says the little voice.

I want to write about being a parent after infertility, since I never expected just how much that journey would inform my worldview and my thoughts on this joyful little girl I get to wake up to every day.

(But think about the people reading this who might still be going through the infertility nightmare, cautions the little voice.

And I do want to write about finding balance, and feeling like I am falling down the rabbit hole of work again, except that while there is a lot of pressure right now with work-related stuff, there is so, so much happiness and fulfillment and joy with my daughter that I am worried I will not strike the appropriate balance, one that shows how much my heart and mind have stretched and changed and re-prioritized in the midst of the same old problem.

(But can do you that in a way that is accessible?, queries the little voice.

And as cognizant as I am of what I set out for this blog to be a few years ago, and trying to stay true to that, I am even more aware of how much of what is really at the core of where I am right now is not necessarily my story to tell.

(Just because you’re a writer doesn’t make all your material fair game, chides the little voice, a point that speaks to me more strongly than ever.

I feel myself pulling inward. I do think there are ways to discuss parenting and still relate it to chronic illness, and I want what I write to reflect the huge shift in my life, but I also want to protect my daughter’s privacy and not put too much out there about her. You won’t see her name here, or details about her health, but perhaps there is more room for a little window into our lives with her.

There have been so many changes in the lives of people close to me over the past several months, and the repercussions of those changes affect me every day. But other people’s illnesses are not my illnesses, and though we are all connected, I am drawn by the urge to protect the vulnerability I see.

And here we are. The days are getting longer. The snow banks are melting a little bit. I survived the bulk of winter without getting too sick or going to the hospital. There is a happy baby chattering away in her crib right now, thrilled to be awake and content to tell secrets to herself for a few minutes. And, I have stories to tell. I just need to get out of my own way.

(You’ll get there.)