Thursday, May 16, 2013

Angelina Jolie And Medical Choice

Every once in a while, there is a news story related to health that I feel compelled to talk about.  Angelina Jolie’s op-ed in the New York Times about undergoing a prophylactic mastectomy, My Medical Choice, is one of them.

(It really is a must-read if you haven’t read it yet).

I had to write about her.  I have heard many examples of this over the last few years, but this is the biggest, most visible example.

Women in the 1960s burned their bras.  Maybe ours is the generation who cuts off our breasts – we don’t need them and they’re killing us?

There are a variety of issues I find with Jolie’s case.  I’ll briefly mention them, even though I don’t want that to be the focus of this post.  She’s a celebrity, therefore she has money and resources that many women don’t have access to.  Not only is genetic testing expensive, so is the surgery, which may not be covered by insurance.  She makes the mastectomy sound minor.  Maybe it’s because she wasn’t going through cancer treatment at the same time, but it seems to me that she is minimizing the procedure.  She also had reconstruction done almost right away, whereas many women have to wait years to do it.

Another issue is that discrimination based on the results of genetic testing is a significant concern (Klitzman 2011) – potentially not in Jolie’s case because she is so visible, but for the general population– especially in the areas of insurance and employment (Penziner, et al. 2008).

Since I have not been directly genetically impacted by breast cancer (a non-blood aunt had it, but – knock on wood – my immediate family has not been impacted by it), I don’t want that to be the focus of this post.

I want to talk about genetic testing in general, and what it would look like for lupus and rheumatoid arthritis, in particular. 

I recently wrote an article for HealthCentral about my sister’s risk of lupus and RA.  In that article, Hoping My Sister and I Share Everything But My Illnesses, I talk about the dilemmas that come with having a disease that most likely has some genetic component to it, and what this means for immediate family members. 

My sister is 18.  She, as of now, has no symptoms or medical conditions that would suggest that she may have lupus or RA.  As of yet, there are no medical tests that will give definitive answers about predisposition to lupus and RA, as there are for conditions like Breast Cancer and Huntington’s Disease.  But she could potentially undergo diagnostic tests to see if she has a positive ANA, elevated Rheumatoid Factor and Sedimentation Rate, etc., which could point to having the disease, but not yet being symptomatic. 

But what would this do for her?  And what would it do to me? 

As I said in the HealthCentral post, she was very young, just 13, when I first got seriously sick five years ago.  While she knows what illnesses I have, and generally how I feel, I haven’t gone into detail with her about the litany of symptoms and problems that lupus and RA can create.  Every time she is tired, or has an ache or a pain, I don’t want her to automatically assume that she has lupus or RA.

I personally think, since she is young and healthy, that it is needless to make her worry about something that likely may never be an issue for her.  

But the era of genetic testing has opened up a brave, new world. 

The availability of genetic tests is growing by the day.  There are currently around 1,000 tests available.  This means that we are faced more and more with decisions regarding our bodies and their future viability.

We can learn more about ourselves and our bodies than ever before.  But what do we do with that information?  Do we wield it for good or evil or a combination of the two? 

In this case, what you don’t know can hurt you.  However, what you can find out can hurt you both physically and emotionally. 

For instance, if someone has a parent with Huntington’s Disease, they might get the disease, but they also may never get it (to be precise, a child has a 50% chance of getting Huntington’s Disease if they have one parent who is affected by the disease).  So how do you live with that information?

Maybe if you have a plan: If I test positive, I’m going to do X.  But if you get that information and you don’t have a plan, then what?

We all have choices to make, both those who are already chronically ill and those who are not yet sick.

For Angelina Jolie, because she was found to carry the BRCA1 mutation, it was determined that her risk for developing breast cancer is 87%, and 50% for ovarian cancer.  For her, odds that were just too great.

Some of the positives of getting genetic testing are that the results might make you less worried about getting a disease, and that you can change your lifestyle and try to minimize your risk of getting a disease (FamilyDoctor.Org 2010).  In Jolie’s case, that meant having a prophylactic mastectomy to decrease her risk of breast cancer from 87% to under 5%. 

Some negatives of genetic testing are that the results might make you more worried, and they might cause stress and guilt, and could cause family problems, and could lead to discrimination (FamilyDoctor.Org 2010).  In the case of Huntington’s Disease, those who undergo predictive testing have been found to have an increased risk of suicide (Robins Wahlin 2007).

This issue is not clear cut.  And it is a personal choice; both whether you choose to get the information provided by genetic testing at all, and what you do once you have that information.

Since this is a personal choice, and should be respected as such, just as people have the right to know, they have the right not to know, as well (Bortolotti and Widdows 2011). 

Ignorance may not be bliss, but for some people, it is more worth it to go about their lives without being constantly worried.  For others, getting tested might provide peace of mind.

I think Angelina Jolie made a brave choice.  I commend her for opening up about her journey.  She picked hopefully having the years her mother didn’t have over keeping a part of her body that could potentially kill her.  She is not the first, nor will she be the last woman, to make this choice.  I know there are women out there who think a prophylactic mastectomy is too extreme.

And I am not sure what I would do if I were in that position, about testing and what comes after.  Just as I am not sure what I would do if the landscape of genetic testing looked different.      

If there were genetic tests available to predict the onset of lupus and RA, or even other autoimmune diseases, would I urge my sister to get tested?  Ultimately, it would be her decision.  It’s her body and her choice.  That might sound cliché, but that’s the reality of the situation.

And that is something we cannot lose sight of.  Just because we have medical technology available, do we have to use it?  Should we be offering predictive testing for diseases for which there is no cure?  Or do we offer hope to those who feel empowered by having that information? 


Bortolotti, Lisa, and Heather Widdows. 2011. “The Right Not to Know: The Case of Psychiatric Disorders.” Journal of Medical Ethics 37 (11): 673-676.

Klitzman, Robert. 2010. “Views of Discrimination among Individuals Confronting Genetic Disease.” Journal of Genetic Counseling 19 (1): 68-83.

Penziner, Elizabeth, Janet K. Williams, Cheryl Erwin, Yvonne Bombard, Anne Wallis, Leigh J. Beglinger, Michael R. Hayden, and Jane S. Paulsen. 2008. “Perceptions of Discrimination Among Persons who Have Undergone Predictive Testing for Huntington’s Disease.” American Journal of Medical Genetics B Neuropsychiatric Genetics 147 (3):320-325.

Robins Wahlin, Tarja-Brita. 2007. “To Know or Not to Know: A Review of Behaviour and Suicidal Ideation in Preclinical Huntington’s Disease.” Patient Education & Counseling 65 (3): 279-287.

Tuesday, May 14, 2013

But It’s Only Arthritis

Something truly terrifying happened to me yesterday. 

I fell in the shower.

Now for a “normal,” healthy person, this might not seem like such a big deal.  You fall, you get back up, no harm, no fowl. 

But for me, because I have rheumatoid arthritis, it is a big deal.

Since I was diagnosed with RA, I have had this pathological fear of breaking my hip, specifically, slipping in the shower and breaking my hip.

My right hip is one body part that is significantly affected by my RA. 

And everything I hear about older people breaking their hips is that it is not an easy injury to come back from.    

Thankfully, I landed on my elbows – my second most impacted body part affected by RA – and not my hip.

But let me tell you, even though I didn’t get hurt “hurt”, getting up wasn’t an easy thing to do.  Thanks, no less, to RA. 

And now I’m afraid of the shower. 

In reality, I stepped too far back and hit the rounded part of the tub.  (Makes me think a stall shower might be a good idea in my next apartment…)  There was no stopping it.  The fall was inevitable.  Although, thankfully, the injury, wasn’t.  I got really lucky.

Again, this might not have had such a big impact on me if I had slipped in the shower and didn’t have RA. 

I think when most people think of arthritis, they think of someone having arthritis in one joint that they take Tylenol for, and that’s it.

Most people don’t realize that, in the case of RA, it is systemic.  It can affect every joint system in the body.

So for those of us who have arthritis, it isn’t only arthritis.

For those parts of my body that are affected, I fear that an injury could exacerbate it and that I could potentially lose function and mobility.  Hence why injuring my already damaged hip would be devastating.  For those parts that are less or not at all affected, I fear that an injury could cause arthritis to begin or get worse.  This has already happened to me with my ankle after a freak injury I had last summer, so this prospect is very real and very scary.

RA has an impact on everything I do (including taking a shower).

What I experienced yesterday was one of my worst fears.  Maybe it sounds lame, but it is what it is.  I saw the fall happening in slow motion and there was nothing I could do but let it happen, or risk really getting hurt.  It was like grasping for straws. 

So while my pride – even though I was alone and no one other than me saw it happen – is injured, thankfully my body really isn’t. 

Of course, I will shower again…eventually… 

But I hope that this can be a lesson to those without arthritis, that it isn’t a “but it’s only” type of thing.  Arthritis can have drastic and long-lasting effects.  It impacts what you do and how you do it, what you think about and how you think, what you fear, and what drives you forward toward the future.

Wednesday, May 8, 2013

Getting The Gears Moving In May

May is both Lupus and Arthritis Awareness month.  I don’t love these awareness months, as for me, awareness is 24/7/365 – in other words, every day of the year.  And while I know that these months are designed to make those healthy people around us aware, with my blog, I hope that I create awareness, again, every day of the week, every month of the year.

It’s also walk season, and I have various issues with these fundraisers.  I think it’s absurd to have lupus walks outside, when so many of us are photosensitive. 

But moving away from my critiques, one important thing to take from both the months and the walks is to get moving. 

This year, HealthCentral is doing a big push for exercise in May for Arthritis Awareness month.  Check out this awesome video of the RA writers exercising:

Because I had to video my workouts for HealthCentral, I made this video of myself kickboxing:

Regardless of your personal opinions about the awareness months and walks, a good lesson to take as the weather (finally) gets nice is to get up and get moving!

Monday, May 6, 2013

When Did I (We) Get So Old?

The last several Fridays, my boyfriend and I have gone out with friends.  They haven’t been wild and crazy nights, but they have necessitated me being down for the count for the rest of the weekend.  This past weekend, the entire weekend was totally crazy (for good reason), which I’ll talk about in a future post, but I am definitely recovering.

It makes me feel old.  Obviously, I know I can’t party like the college kids, but I never did, even when I was a college kid.  But it would be nice to do the things that people my age do, and not feel it for days after, but that’s clearly not an option my body gives me.

But I’m totally stubborn when it comes to this.  I tend to overly push my body because I don’t want to have to explain to people I don’t know all that well what’s going on.

And I guess I’m somewhat in denial.  I’ll be 28 this year, and the things I can and cannot do are different than when I was 18.  But it’s not that.  The “normal” aging process, I can handle to a point because everyone goes through it.  It’s the lupus and RA “premature” aging process that is hard to deal with. 

Life is so strange.  I don’t know where the time has gone. 

One of my best friends e-mailed me recently to tell me she was pregnant.

When did we become old enough to get married and have babies?

These were my friends before I got sick.  Friends I anticipated sharing important life events with, but something I hadn’t considered was that I would get sick at a young age. 
My life would change and theirs would go on staying the same.  Normal lifecycle events would emerge while I would be worried about being on steroids versus not, and the myriad other issues that come up with having these illnesses.

In other words, my life is different.  It’s occurring both parallel and perpendicular to my friends’ lives.  We all have certain experiences that come with getting to be in our late twenties – getting married, having kids, our lives being different than they used to be.  But I also have this perpendicular universe that I live in, where my experiences are quite different from my friends.  And that’s okay.  But how do you make sense of both worlds at once?

And how do you balance wanting to do what people your age do without any thought whatsoever, with making sure your body doesn’t betray you even more than it already has?  When will I overdue it to the point where there’s no coming back? Because that’s how this all started, right?  A trigger that tipped the scales irreversibly. 

I feel old.  Both because I am at a phase in my life where grown-up things are happening to me and those around me.  But also because, for the last five years, I have been dealing with something that should be beyond my years.  But that’s the trick with chronic illness.  I feel too young to have had this happen, but there are people my age who have dealt with illness far longer than I have.  

Wednesday, May 1, 2013

Interview With Author Laurie Edwards: “In The Kingdom of the Sick”*

Today I have the honor of having Laurie Edwards here, author of “In the Kingdom of the Sick: A Social History of Chronic Illness in America”. 

I had the pleasure of meeting Laurie several years ago.  Her first book, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties”, resonated with me as a young twenty something who was just beginning to cope with a diagnosis of multiple chronic illnesses.  And now her new book, “In the Kingdom of the Sick”, resonates with me as I prepare to complete my PhD in sociology, with a focus on health and social movements.  So as far as blogging relationships go, she’s an old friend.

And if you’re a fellow chronic illness blogger, you’ll recognize a host of characters that play a role in the book, including Duncan Cross, Aviva of Sick Momma, Barbara Kivowitz of In Sickness As In Health, Rosalind Joffe, Kairol Rosenthal of Everything Changes, and Britta formerly of Chronically Young. 

While I would liked to have seen a bit more in the book specifically from patients with lupus and rheumatoid arthritis – my personal biases – this book provides context for why the medical system works the way it does today, and how that impacts patients, in a very real way.  This is an important piece of the story, both for patients who are living with chronic illnesses, family and friends of patients, pharmaceutical companies who create drugs, and doctors. 

First off, can you tell my readers a little bit about yourself?

LE: I am a 33-year-old mother, writer, and lecturer at Northeastern University, where I teach writing for the health sciences.  I am also a lifelong patient with chronic illness—I have primary ciliary dyskinesia (PCD), a rare genetic lung disorder, bronchiectasis, celiac disease, and other conditions.

What prompted you to write a book on the “social history of chronic illness”?

LE: Scholar and medical historian Roy Porter asserts, “Disease is a social development no less than the medicine that combats it. In the Kingdom of the Sick is a social history of chronic illness in America, because I found it was impossible to extricate the experiences of living with physical illness from the competing forces of culture, social norms, and technology that surround patients. Inevitably, this became as much a social history of activism as it is a social history of disease, because it was equally hard to tease out advancements in treatment and research from the patients and advocates who fought for them.

Why is it important that the lay public know this information?  Patients?  Medical professionals?

LE: Quite simply, we can’t afford to ignore chronic illness.  An estimated 133 million patients live with chronic illness, and by 2025, that number is expected to reach 164 million.  It is responsible for 7/10 deaths, as well as ¾ of all health care spending.  But it’s so much more than that, and that’s why we need this dialogue.  Chronic illness is not something that happens to other people—it will happen to most of us, and there are still these underlying assumptions and misconceptions about it that are problematic.  For example, there is still this idea that people who are sick are sick through their own fault—consider AIDS or type 2 diabetes— and this underlying idea that people with chronic illness are somehow weaker in character or fortitude.  This is amplified in the way we treat women with pain, for example, who are often told their pain is either in their heads, or that they should just be able to push through it.

The definition of chronic illness—something that is treatable, but not curable—has remained fairly static, but the scope of conditions now considered chronic has changed so much. What are the consequences of that scope change, both positive and negative? That’s where I started.

I appreciate your discussion of the disability rights movement, the strides it made, and the difficulties that remain for people with chronic illnesses.  As a personal example, as a student, I have found that the student disability office isn’t really equipped to deal with students who have chronic illnesses that change and don’t require a standard accommodation.  Given this, what would you suggest the legions of chronic Illness disease advocates online do to create systemic change, both online and offline?  (Of course books like yours do a great job of bringing many important issues to the fore)

LE: I think the Americans with Disabilities Act is certainly a solid foundation, but the trouble students with chronic illnesses often experience in trying to get accommodations is similar to the struggles we see in the workplace. Both speak to an underlying tension with chronic illness itself: it is often invisible, and it is unpredictable.

When it was passed in the early 1990s, the ADA envisioned physical disability as a constant state—if you had vision impairments, hearing impairments, or mobility impairments, for example, those impairments would remain static.  As you know, when it comes to chronic illness, the fact that symptoms and needs can fluctuate can really make it difficult to have a conversation about what patients need.

As an instructor and a patient, I see those challenges from both sides: when should I disclose illness to my employer?  How can I help students with chronic illness in my classes, especially those who choose not to register with disability services, or whose conditions are really disrupting their academic experience?  I always say that communication is key—the more I know about what is going on, the more flexible I can be.

Cultural change is slow to evolve, but it starts with conversation and awareness that there is a problem, and in that respect, the more we acknowledge the gray space that is chronic illness and are able to clearly define what we need, the better.  We have gained so much from the disability rights movement and have acquired a phenomenal vocabulary to discuss accommodations, but now we need to figure out how best to apply it to chronic illness.

You focus a lot on women.  As someone who has an illness (lupus) that primarily effects women, I know firsthand that gender plays a distinct role in healthcare delivery and outcomes.  What do you think are some of the key issues relating to gender and health?   

LE: Of all the major themes in this book, the relationship between gender and illness is one of the most compelling, and resonant.  The shadow of hysterical illness still lingers today, and the “it’s all in your head” mentality contributes significantly to delays in diagnosis and treatment of many chronic and autoimmune disorders, particularly in terms of pain conditions.

For example, women are three times more likely than men to develop autoimmune diseases, two and a half times more likely to develop rheumatoid arthritis, four times more likely to have chronic fatigue, and nine times more likely to be diagnosed with fibromyalgia.  Not only are they more likely to develop pain conditions but they are more sensitive to pain.  Research shows that women are more likely to have their pain symptoms dismissed as psychogenic or emotional.  When they are treated, it is often less aggressively than men are, and women are more likely to be prescribed antidepressants where men would receive painkillers.  As many as 50 million American women live with a neglected pain disorder, which is poorly understood and poorly researched.  Lack of physician education about female pain disorders and appropriate pain management compounds the problem, and delays in appropriate diagnosis and treatment lead to worsening symptoms and decline in both physical and mental health.

It’s such a complex and relevant topic—I was on Fresh Air with Terry Gross a couple weeks ago and a lot of what aired was about gender and pain, and the e-mails continue to pour in from people who share the same basic story of doubt, even if their disease-specific symptoms differ.  I talk about this in much more depth in the book, but I really believe sex-based clinical research is the answer—the best way to dispel myths and misconceptions is with facts, so the more we understand about how men and women experience pain, the better.

You make an interesting point about walk-a-thons, other fundraisers, and consumerism.  How do these things both help and hurt the patient groups they represent?  (I’ve noticed that in the walks that are offered for lupus and rheumatoid arthritis, they simply do not make sense for people with these illnesses).  

Cause-related marketing for diseases has done a lot to raise awareness, and to fundraise for research and especially for cures.  There are a lot of positives to this—these events build rapport and community, decrease the sense of isolation illness can cause, and help raise money for more effective treatments.

But consider another angle—with chronic illness, there is no finite “finish line” and cure and such cultural emphasis on survivorship has the potential to leave out so many of these experiences.  Raising awareness of diseases is setting the bar too low. It’s an important step, and of course, so is the quest for a cure, but we also need to make sure the daily needs and realities of patients with illnesses don’t get lost in the shuffle.  I think that’s where a lot of the criticism about pink-washing in particular, and cause-related marketing of disease in general, comes from.  As one small example, a couple of years ago, Susan G. Komen for the Cure launched a special perfume where proceeds would benefit its quest for a cure for breast cancer.  It ended up deciding to reformulate the perfume after critics claimed it contained neurotoxins that can cause cancer.  Plus, as many patients pointed out, women who are undergoing chemotherapy to treat their breast cancer are extremely sensitive to smells and get nauseous easily. Perfume is not exactly something that makes sense.

Duncan Cross, an interviewee in the book, mentioned a charity event for Crohn’s disease he had to decline because the bike route didn’t have enough port-a-potties, an irony that really points to this tension in a striking way.

These are just some examples, but let’s make sure patients already living with illness can access the specialists they need, get coverage for the medications they are prescribed, and have the psychosocial support systems they need, too.  I’m a rare disease patient and course I would love a cure, but I don’t think about it all that regularly.  I’m trying to get what I need so I can be as productive as possible. 

What’s next for you?

In the short term, I’m looking forward to having more time for my freelance opportunities, and more time with my family (and more sleep!)  I will definitely write another book, but for right now, I’m enjoying talking about In the Kingdom of the Sick and doing what I can to get the book’s message out there.

Thanks, Laurie, for including Getting Closer To Myself on your virtual book tour.

*I received a free copy of this book courtesy of the author.  However, my choice to have Laurie as a guest blogger was my choice, and had to do with my personal opinion of the book.