Monday, April 27, 2009

browser life exclusive: my review of "Life Disrupted" by Laurie Edwards.... 

The full title of the book is actually "Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties". The author, Laurie Edwards, is a blog buddy. When you get the chance, check out www.achronicdose.com.

Ms. Edwards, like many of us, has a constellation of ailments, but her most serious one is an extremely rare genetic disorder in which her lungs are unable to properly filter out mucus and infection. She must endure frequent hospitalizations and daily treatments to ensure she is able to breathe well enough to function. Because she was born with this disorder, she is a qualified expert on the subject of being a patient.

Ok, so technically, I'm not quite in the age group the book addresses. Doesn't matter. People in their forties or even fifties will find the topics familiar to them and will be able to relate to it, particularly if they developed a chronic illness while still in that age group, as I did.

The "getting real" in the title refers to learning to co-exist with an ailment or ailments as you go about your life. The nature and severity of illness affects whether or not you can work, go to school, the sort of person you date and/or marry, whether you can or should have children. Most twenty-somethings don't have to worry about frequent hospital stays, whether their love interest will be capable of also being their caretaker, or if they will even live to the age of 30 or 40.

Life through the lens of chronic illness is both more complicated and simpler than a healthy life. On the one hand, accommodating therapies, restrictions, energy levels, etc. can be an unwelcome intrusion. On the other, a person who survives and succeeds despite obstacles is able to prioritize what is really important in their life.

The book is divided into three sections: "Medical Life", "Public Life", and "Personal Life". The individual chapters are brief, which is good for people who have trouble reading lengthy passages. And the 44 chapters address a wide variety of scenarios a young adult with chronic illness might face; several I haven't seen in any other book.

The "Medical Life" section covered subjects with which I was well familiar, such as the trials and tribulations of getting proper diagnoses and medical professionals who are willing to listen, and subjects a bit more foreign to me, such as how to make frequent hospital stays more bearable. Laurie Edwards recognizes the tightrope most chronic patients must walk, that of being one's own advocate when necessary. On one side, blindly following doctor's orders when you suspect them to be wrong can in some cases lead to irreparable harm; on the other, if you put up a fight every single time on every single small thing, you run the risk of being labeled a non-compliant patient that no doctor wants to deal with.

One thing the chronically ill end up learning, usually early on, is that the word "patient" has a double meaning. Instant gratification is not something that happens with regard to finding the right doctor, the right medication or other treatment, and it definitely doesn't happen when waiting for an appointment, for tests, or even at times in the emergency room. I like how Ms. Edwards points out that you can tell who has spent a lot of time in waiting rooms by whether they have brought snacks and something to do.

I appreciated the chapter on how most of us with a chronic illness must accept a certain amount of intrusion upon our private lives in order to function. Luckily, mine is mostly limited to strategically placed pillboxes, eye drops, diabetes testing supplies, asthma inhalers, a neti pot and having something to drink with me at all times. But I read with amazement and amusement how the author endured her first home chest physiotherapy, which was quite painful and embarrassing, and how she must now conform her schedule to having this done at least once a day, every day.

Part One contains four consecutive chapters on hospitals, from a semi-humorous glossary of customary phrases (like the difference between a toilet and a commode) to how the author makes hospital stays less boring and more bearable. She also stresses the importance of speaking up when you are not given the treatment you need. Hospitals are busy places with constantly changing staff, and if you have a history of drug allergy or other potentially life-threatening complication, it is imperative that you (or someone on your behalf, if you are too ill) makes this known, frequently if necessary.

Part Two, "Public Life" is subtitled "Chronic Illness in an Otherwise Healthy World". Like it or not, there are times when the sick feel alienated from society or at least out of sync with it, either out of necessity or due to lack of understanding. Managing multiple diseases is in itself awkward, and it can lead to uncertainty when dealing with the public.

Ms. Edwards describes a sort of "culture shock" that can happen when moving between the world of the sick and world of the healthy. After spending time in the hospital or perhaps home bound for a prolonged period and dealing with significant issues like being able to walk or breathe, it can be quite jarring to try to interact with people whose most pressing concern is what color to paint their fingernails. But those same people can be a welcome distraction sometimes.

There are two back to back chapters on physical appearance and the chronically ill. For those with a visible illness, the tendency, particularly among younger people, is to try to cover up anything that might make you look different and try your best to look normal, sometimes at the expense of a great deal of time and energy. For those with invisible ailments, they must deal with dismissive or even hostile attitudes from people who won't believe anything is wrong because you appear so healthy.

In both chapters, the author hits the nail right on the head, which is impressive because some people are sick for decades and never learn these lessons. In "Why I Dress in Layers...and Other Tales of Embarrassing Insecurities", she states that the average person who doesn't know you is probably not going to notice signs of illness that you think are obvious, so it's better to just relax and enjoy life rather than worry what someone thinks of you. In the chapter "'Invisible' Illness Unmasked", she wisely counsels that when confronted with ignorant or even rude comments about whether or not you are really sick, consider the source and don't let other people's opinions define your condition.

Chapter 18 addresses rare conditions and how to explain them to others. Except in medical situations, most people are happy with a very simple summary. For example, I tell most people that Sjogren's is an autoimmune condition in the same disease category as lupus and rheumatoid arthritis; I mention the other two diseases because most people have heard of them and so they will have a frame of reference.

Chapter 19 is about pursuing higher education when you are chronically ill. Most traditional undergraduate programs don't have much room for variation, so some creativity and flexibility on the part of both student and staff may be in order. For instance, taking a lighter class load to avoid flareups, scheduling classes during a certain time of day or year, online courses, putting together a plan for making up missed work, etc. can make the difference between flunking or successfully completing a degree.

In subsequent chapters, "Life Disrupted" moves into the workplace. It touches upon important issues such as when and how much do you tell your employer about your illness, adapting your career path to accommodate your condition, and dealing with financial fallout from switching to part-time or no work. And of course, of primary concern to most with chronic illness, acquiring and keeping health insurance benefits.

I like the chapter on asking for accommodations in public places such as restaurants. Like Ms. Edwards, I hate to be a pain and tend to be hesitant in this area, but I have to remind myself that I will be the one paying the price if I don't make sure I get what I need. Just smile and be pleasant while asking, and most of the time, that is sufficient.

Another good chapter is the one dedicated to those of us with multiple ailments and the difficulty of juggling medications, appointments and symptoms. Especially in the case of chronic pain, so much is competing for our sensory attention that we sometimes ignore signs of something that needs to be addressed. Sometimes we need to step back and analyze a new symptom from a healthy person's perspective (as in, would a healthy person go do a doctor for this?) and react accordingly.

The segment on "Sick Chic" was amusing to me, mainly because I gave up trying to be stylish years ago because I found it used up too much of my energy. But I could relate to the debate about comfortable versus cool-looking footwear. I do secretly still yearn for my purple suede pumps of yesteryear.

Part Two concludes with a chapter on acceptance of one's medical conditions and how this does NOT mean letting the disease "win". This is something I wish more healthy people could understand. There are times that in order to move forward with our lives, we must realize that we are probably not going to wake up tomorrow and magically be all better, so sometimes that means scaling back our activities or expectations today in order to be less exhausted the next day; in other words, we must learn to co-exist with our less than perfect bodies and less than perfect health and do the best we can with what we have to work with.

Part Three is all about our personal relationships and how chronic illness affects them. The chapters in this section begin with parents and siblings and move on to friends, dating, significant others and starting a family of one's own. The people who are the closest to us are also the ones in whom we confide when we're particularly ill, who may be called upon to be our caretakers, whose own quality of life can be linked to ours.

A chapter I enthusiastically recommend is "The Chronic Comic". I, like Ms. Edwards, use humor as a coping mechanism, particularly in social situations where not everyone knows you're sick. She notes that making light of your condition is fine as long as it isn't so pervasive as to constitute denial of it, which is an excellent observation.

In "Chronic Socialites", the author addresses a frustration with which most with chronic ailments can identify: that of having to cancel plans with family and friends due to our health, and often at the last minute. Rather than give in to guilt about it, she suggests altering our social schedules when possible and build in rest breaks if needed. Depending on the particular demands of the illness involved, some ideas might include: having people come see you rather than going out, meeting someplace close to your home, socializing at a time of day when your energy is best, talk via telephone when you can't do it in person, making sure that your clothing (especially shoes) will not cause undue discomfort, bringing a special pillow or your own food or whatever you need that will allow you to socialize longer without compromising your health.

Here's an issue that the chronically ill sometimes struggle with: being empathetic toward otherwise healthy people when they develop a minor, temporary condition that seems like a very big deal to them. It is incredibly tempting to say: "You know that cold you have? Multiply it by ten and you'll get some idea of how I feel every day!" But whenever possible, we should try to be supportive and listen to their complaints, reminding ourselves how often we require the same of others.

One chapter deals with whether or not illness is a deal-breaker in forming love relationships. It certainly can be for a healthy person, but what about the person who is ill? Some, particularly those whose ailments are life-shortening, avoid serious relationships to spare a potential partner pain, but is that always wise?

For those who do go forward with long-term relationships, the question becomes: when do you tell a potential partner about your illness, and how much do you say initially? Ms. Edwards calls this a relationship defining talk. She tells the story about the night she met the man she would later marry, how she broke her own "rules" by telling him everything, and how that worked for her.

Part Three moves on into the realm of chronic illness and dating, noting that severe disease flare-ups can test the mettle of a potential love interest. But knowing a person can handle even the least glamorous ailment and still wants to be with the sick person means a lot less of the ambiguity that can plague relationships between two healthy people. The sick person might wonder how their partner finds them attractive sometimes, but they seldom doubt their partner cares.

A wonderful chapter in this book is "Meltdown Mode". In it, the author says that even the most sensible, patient and tolerant person with chronic illness has their breaking point, and that they usually flip out over something minor because it's just one thing too many out of their control. She describes a temper tantrum she once had over salad dressing that had me laughing even as I acknowledged that I've had many similar moments.

The next seven chapters are dedicated to issues faced by married people when at least one of them is chronically ill. These really caught my attention because I have found so little material about this elsewhere, either in books or online. Those on the "inside" know the divorce rate among the chronically ill is high, but few seem eager to discuss why or to highlight what it looks like when the marriage is working.

Chapter 37 addresses the learning curve of the healthy person if they aren't familiar with your type of illness prior to meeting you. Ms. Edwards wisely advises cutting your partner some slack when they over-react or don't know what they can do to help you. Sometimes they are frustrated that they can't fix you and must learn how to handle this.

If there is something specific a spouse can do to help, the author suggests that the chronically ill person let them do so if they ask to. This can bring you both closer, takes some of the burden of self-care off the sick person, and allows the spouse to learn more about the illness. Learning more is a good thing, especially if there could be times the sick person cannot communicate with medical personnel and needs someone else to do it.

In Chapter 39, Ms. Edwards notes that while there is plenty of material available on planning a storybook wedding, pre-marriage counseling at church, etc., there is no manual on how to be a good spouse to a chronically ill person. And nothing on how the sick person should include the healthy one in making medical decisions. The only solution in this case is learning by doing.

Here's a scary statistic: among marriages where at least one partner is chronically ill, the divorce rate is 75 percent. But for those who are able to make it work, their marriage may in fact be stronger because they overcome more obstacles than the average couple and know they can withstand whatever life throws at them. In Chapter 40, the author discusses her own and her parents marriages and why they are successful.

When the healthy spouse becomes the caregiver for the sick one, who takes care of the healthy one? Chapter 41 addresses the importance of support for the caregiving spouse, whether it be family, professional counseling or just getting out with friends once in awhile for something fun and non-illness related. It is also reminds us that when the healthy spouse gets frustrated, it's often the illness they're mad at rather than their partner.

Chapter 42 is called "The Chronic Income Gap". It's an unfortunate fact that being sick is expensive, sometimes exorbitantly so. Add to that limitations on being able to work, and you've got some major financial stress on your hands.

Laurie Edwards is very honest, funny and wise in "Life Disrupted", her first book. I recommend it to anyone under the age of 50 who has a chronic illness or knows someone who does. The very existence of the book is proof that a disrupted life doesn't have to be an empty one.

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