Body Shaming and Chronic Illness

One of the first things I heard when I started this illness journey was that my body was attacking itself.  And that rather than fighting off foreign invaders, my body was mistaking my own organs and joints as things that weren’t actually supposed to be there.

While that provides a somewhat easy explanation for a very complicated process of what’s going on, it’s a profoundly negative thing to be told.  And it sticks with you. 

We are told that our bodies are attacking themselves.  We are told that we must have done something along the way that caused this to happen. 

I’ve never been the most confident person in the world.  I’ve been self-conscious most of my life.  And THEN I got sick.    

But with all of this stuff going on, I never really had to worry about my weight.  If anything, I had to be worried about being underweight.  And then, slowly, my weight crept up.

I felt like I was stuck in a rut.  While I used to look at some pictures of me in high school and think I was chubby, I know now that I really wasn’t.  And I was so fixated on gaining the “Freshman 15” in college that I inadvertently lost 15 pounds.    

At my lowest since high school, when I first went to my rheumatologist, I weighed in at 86 pounds.  I know now that, that definitely wasn’t healthy.  And part of my lack of eating was the amount of pain I was in.  That had a lot to do with it.  It wasn’t that, that was my goal all along, to weigh 86 pounds.  And until about five years ago, I never topped out at more than 98 pounds.  Then things changed.  And the number kept going up and up.  When I went to the doctor in February, I weighed in at 121 pounds.  It was the most I have ever weighed in my whole life, and I was completely disgusted with myself.    

That number on the scale was the kick in the pants that I needed to do something about it.  And it wasn’t just the number on the scale.  It was the way I felt.  It was the fact that I could barely look in the mirror let alone consider letting another human being see me without clothes on.  No one in my life was explicitly telling me that I was fat, but I could tell by some of the looks I got that people thought I had gained weight, and I had.  This doesn’t really hit you until you start losing weight and people tell you how great you look.    

So in June, I joined Weight Watchers.  It’s not so much that I wanted to diet, as much as whatever I was doing myself – mainly eating as many carbs and as few fruits and vegetables as possible – wasn’t working.  Sure, it didn’t help that eight years ago I got sick, two years ago my dad died, eight months ago I lost my job and my boyfriend of three and a half years broke up with me, and I moved back to Michigan; jobless, boyfriend-less, and otherwise confused about where my life was headed.  Who would blame me if pizza became my go-to food? 

But I’ve had to do something, and I’ve tried to look at this whole experience as more of a lifestyle change than a diet. 

But I assure you, there is no judgment towards other people.  I know some people I have talked to have looked at me and said “I would kill to weigh what you weighed at your highest.”  But that’s not what it’s about.  It’s about the fact that I didn’t feel like I looked good, and I didn’t feel good, physically or emotionally.  That extra weight was literally and figuratively weighing me down.  

But slowly, I’m working on turning my negative self-talk into positive self-talk.  I can actually look at myself in the mirror again, and shocker, kind of like what I see.  I’ve lost almost 13 pounds, which puts me almost at the high end of my goal.  I know 13 pounds isn’t a lot, but it is for me.  It’s actually 10% of my starting weight.  But honestly, and I keep having to tell myself this – the pounds don’t matter, the percentage doesn’t matter, as much as how I feel, physically and emotionally, matters.    

I hate when my rheumatologist asks me if I’m exercising.  Because it’s not code for “are you moving enough?”  It’s code for “get off your butt and move, you fat ass”.  Trust me, I’ve known him long enough to know that, that’s exactly what he’s saying.  And rather than retort back, “And what’s your excuse?” I smile and nod, and pretend that what he said hasn’t hurt me at all, when clearly, it has. 

I don’t think I’ll ever hit below the 100 pound mark again, but who am I kidding?  I’m 31 years old.  It’s not as easy as it used to be.  Seriously, at 25, it all started going downhill. 

So from the very beginning of our illness journeys, we are fed information about our bodies that our profoundly negative.  And we are expected, despite the pain, despite the stiffness, despite the medications and their side effects, despite whatever else in life might happen besides our illnesses, to rise above, and do it with a smile and all while looking great, all like you would never know we were sick.    

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? 

References

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

FamilyDoctor.Org. 2010. “Genetic Testing: What You Should Know.” <http://familydoctor.org/familydoctor/en/prevention-wellness/staying-healthy/healthy-living/genetic-testing-what-you-should-know.html>

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.

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.  

I Can’t Stop Looking At My RA Hands

“…My hands are small, I know

But they’re not yours, they are my own

But they’re not yours, they are my own…”

-         “Hands” by Jewel

  

RA hands.  Kind of like jazz hands.  But not.  Not even close.  Just the opposite.

Jazz  hands are excited, fingers splayed and moving fervently.

RA hands are hands that can barely be splayed at all.  They are stiff, bulbous, sometimes deformed.    

It’s only recently that I’ve begun to notice the occurrence of bulbous joints.  And to me, not only do they feel bad, they look gross.  My fingers look like little sausages, no definition at the joints, just puff. 

I think that for those who do not have RA, they take for granted all that their hands do.  And you don’t realize how much they do and how important they are until your function becomes limited.  Then you realize that your hands are a key instrument in daily life.

Hands are also a measure of time. 

There’s a Celtic wedding tradition, The Blessing of the Hands, or Hand Blessing, the origin of which I am not completely sure.  I’m not Celtic, but I love the words and the meaning:

These are the hands that will work alongside yours, as together you build your future.

These are the hands that will passionately love you and cherish you through the years, and with the slightest touch, will comfort you like no other.

These are the hands that will hold you when fear or grief fills your mind.

These are the hands that will countless times wipe the tears from your eyes; tears of sorrow, and tears of joy.

These are the hands that will tenderly hold your children.

These are the hands that will help you to hold your family as one.

These are the hands that will give you strength when you need it.

And lastly, these are the hands that even when wrinkled and aged, will still be reaching for yours, still giving you the same unspoken tenderness with just a touch.

Like I said, I love the words and the sentiment, but at the same time, it makes me sad.  If you look at my hands, at least with respect to the fingers and joints, they look beyond their years, like I’ve been toiling laboriously for many, many more decades than I have actually been alive.

In reality, my hands tell a story, the story of RA.  It starts at the tips of my fingers and moves along, taking stock of the changes that have taken place in the rest of my body.  Wrists that lock and pop, elbows that do not have full extension anymore, shoulders that balance the weight of  the world, hips that lock and smart, knees that support this body, just barely sometimes, and toes that are genetically defunct.  But it all begins in the hands.      

For now, my hands function despite the bulbous joints, but it’s sometimes hard to hold a hardcover book, I struggle with doing and undoing buttons, and opening jars. 

A writer needs her hands to write, and I won’t let that get taken away because that is all I have.  The pen is mightier than the sword.  The person is mightier than the illness.  I have to stay one step ahead, or one finger ahead. 

Sometimes, if I stare long enough at my hands, I can see the minute changes that are happening.  I can see the passage of time.  And it all starts at the hands. 

Sometimes Love Is Just Love

I’m not in a super awesome place right now health-wise.  Unfortunately, my RA seems to be back with a vengeance.  I’m having a lot of issues physically. 

It’s hard for me to use a knife to cut my food.  My boyfriend and I were out to dinner and I was struggling.  He grabbed the plate and the knife and did what I couldn’t do.  I was mortified.  I’m 27 years old and my boyfriend is cutting my food like I’m a four year old. 

This hasn’t happened since I first got sick.  I was home for the holidays and we were having dinner, I was sitting next to my sister, and she had to cut my food for me. 

Clasping my bra is a struggle.  Sometimes managing to get my coat on takes a ridiculous amount of time and energy.  Buttons of any kind are difficult to do with my somewhat useless fingers. 

And when I lay down, I feel like my bones are crushing in on each other.  Again, I haven’t felt this way since I first got sick. 

Lying down is so painful at times.  And when my boyfriend moves his body closer to mine, I don’t want to sound like I don’t love him, but him being that close physically is painful for me.

I don’t want it to be, but it is. 

And he can tell without me saying anything.  And he tells me he has an idea.  He leaves the room and comes back with two ice packs.  He places one against my back and the other between my knees.

At first I’m hesitant, not just because of the pain, but because of the physical and emotional closeness that ensues. 

It’s hard to struggle so openly in front of the person you love. 

It’s feels vulnerable in a way that nothing else does.

And I’m not good at accepting help. 

As frustrating as some of his quirks can be, in that moment, they don’t matter.   Nothing else matters.

He rubs the ice pack up and down my body.  Not in a sensual way, but in a healing way. 

And it feels like heaven.  Sometimes heat feels good, but when your joints are hot and angry, heat actually hurts. 

As I face the wall, I cry silent tears.  For my pain, for being sick, but most of all, for having this amazing person next to me who I’ll never be able to repay in kind. 

No one has ever done anything like this for me before.  Not that I’ve asked.  And while I tried to protest, I immediately felt better.  I slept with them (him and the ice packs) through the night. 

And the thing about it is, if this isn’t love, I don’t know what is. 

Really. 

But all of the insecure illness feelings come back in a rush of anxiety. 

This should be our lives 40 or 50 years from now.  Not right now.  These physical struggles disgust me.  I can’t hide them, but I so wish they weren’t happening.

And then I have to remind myself that things won’t always be like this.  There will be better days and worse days. 

I don’t know how to do this.  And I don’t feel that I deserve someone like this.

And sometimes, when someone does something so unselfishly, because they want to and not because of they have to or because of the recognition they’ll receive, it makes you want to shout it from the rooftops. 

Love is not just a noun.  It’s a verb.  It’s more than a word.  It’s an action.  And sometimes actions speak louder than words.

They speak volumes, so loud, that there’s nothing left to say.

“Hips Don’t Lie” (But Faces Do…)

“I’m fine, and my hips are fine. My false knee is fine. My false hips are fine. Everything’s cooking.”

- Liza Minnelli

Why the title of this post, you’re wondering? Because I think my hips are a metaphor for my life, albeit in a rather awkward and roundabout way. My hips tell me a lot about how I’m doing…

This week was not so good in the health department. I’ve been exhausted and in pain. But the main thing is that my hips have been giving me a lot of trouble. And they seem to be one of the first things to flare up, especially when I overload my already too heavy bag and trek nearly a mile to campus.

The point is, you can carry around excess baggage until you’re blue in the face, but whether your food indulgences go straight to your hips or you’re carrying the wait of the world on your shoulders, it’s always the hips that feel the brunt of it (sad, but true, I know).

We wear masks to conceal are true feelings, and I’ve become rather adept at hiding my pain from others. Sure, there are some who see through it, but it all comes back to the hips. One friend of mine told me that she used to look over at me during class. If my legs were crossed, she knew it was a good day. If my legs weren’t crossed, she knew I was in pain. Pretty ironic, huh?

Something that surprises me is how little we really know about the people in our lives, whether it’s because they haven’t told us or we haven’t bothered to ask (or have been afraid to). But when you’re walking slowly and can’t keep up, or you’re limping, it’s pretty obvious to others that there’s something going on…

Yes, I have a love-hate relationship with my body; I hate to love my body, and my body loves to hate me. And I am trying to work through this, I really am. But yesterday morning was one of those times when I pushed myself to workout, and now I am completely regretting it.

So, maybe the saying shouldn’t be “read my lips,” but rather, read my hips. On second thought, maybe not…

At least for me right now, it seems like it’s all in the hips…