Monday, September 27, 2010

Same Stuff, Different Day: Unfortunate Lessons In Disclosure

Where was I during Invisible Illness Week? I was, well, invisible. I’ve had two feet firmly planted in dissertation reading land, and have been busy with that. But now I’m back in blogging and chronic illness land, albeit with two feet still firmly planted in dissertation land, and I am, needless to say, royally pissed.

For the second time in a month, I am being told that I need to get my doctor’s permission before I’m allowed to do something that I want to (and can) do.

I am interested in going on a group trip abroad. After disclosing my chronic illnesses, I was told that my doctor would have to approve. The form is written in such a way that I’m not sure any doctor would sign off on it. It makes the trip sound absolutely ridiculous. Observe:

- “11-17 hour flight depending on departure point”
- “Demanding agenda which includes early wake up calls, long days traveling, and late evenings socializing”
- “Walking tours that can last several hours on hard pavement”
- “Crawling underground, sometimes in confined caves…”

Wow, don’t they make it sound so appealing? Would my doctor approve of this, the way they make it sound? Would yours? Sounds more like the Olympics abroad, rather than a tour.

And I’m planning on training to walk a half marathon next year with my aunt. Part of my reasoning of wanting to do personal training (not physical therapy) was trying to get my body in shape to train. And when I do this, which I will, I’ll do it in the name of lupus and rheumatoid arthritis. They didn’t stop me from doing it, they fueled the fire.

I was told that in the name of “liability and safety,” I would have to have my doctor sign off. But quite honestly, it’s not really any of my doctor’s business. I don’t need his permission to do anything. I explained that I am allowed to do any kind of exercise that I feel I am able to do. But clearly, my opinion, the opinion of the person who is going to be paying for services, really has no say in this matter.

I was also told that the package I was going to sign up for tends to be “challenging” and that maybe I should pick something else. Shouldn’t I be the judge of that? Or at the very least, shouldn’t you meet with me in person and see my ability level?

Do I really want to train at a place like this?

In both cases, I felt like my illness status was pertinent information. And I honestly believed that it would make things easier to be up front about them. But instead, rather than making things easier, I am being hit with road blocks.

The reason I mentioned my illnesses in the first place is that they obviously impact my fitness goals, and I wanted to know whether I could opt out of activities on the trip abroad if I happen not to feel well.

But please, let me be the decision maker. Make me sign a consent form waiving liability. I won’t hold you liable for letting me do what I want to do, as long as you don’t hold me liable for my illnesses.

And how dare someone say that I am a “liability” because I’m sick. My illnesses are only a liability for me. Healthy people need to get over themselves!

These experiences make me feel like getting sick was my fault, and that my goal in life is to inconvenience people. I’m seen as a liability, a “thing” needing “risk management” and “risk reduction.” Some people certainly know how to make a girl, albeit a chronically ill one, feel special.

The form for personal training also spouts this nicety: “We recognize that you are eager to start your fitness program, and we sincerely regret any inconvenience that this may cause you.”

Honestly, I highly doubt that, because if they really were sincere, they wouldn’t make me feel like this to begin with.

The reason the University of Michigan made changes to the football stadium in terms of handicap accessibility wasn’t because they were so concerned about being inclusive and non-discriminatory. They didn’t want to get sued. That was the bottom line.

In other words, I am in an environment that is clearly not inclusive, and where the bottom line matters a whole lot more than pretty much anything else.

But then I think back to many of the experiences of disclosure that I’ve had, and many of them have been profoundly negative. So really, this is nothing new. This is just another page out of the chronic illness book.

And this just goes to show that sometimes it is better to not look sick and not say anything about it. These experiences are begging me to be dishonest. Well, it’s more like conveniently leaving out information than lying about it. So I guess from now on, my policy is going to be something of “Don’t ask, don’t tell.” I don’t think there’s anywhere that says I’m legally required to disclose my illness status. And from now on, I probably won’t.

It’s one thing if I make decisions to do or not do things because I’m sick, but people telling me no only makes me want to do it more

I just became a candidate for my PhD and have earned my Master’s degree, all while chronically ill. So while these experiences are hurtful, and border on discrimination, I’m not going to let other people who have no idea what my life is like, stand in my way.

So I’m calling a spade a spade. No one is going to tell me what I am and am not capable of. It’s ridiculous for someone to even think that by virtue of knowing what illnesses I have, that they therefore know anything and everything about me.

*** Postscript (9/28/2010) ***

As I suspected, my rheumatologist submitted the form for personal training and didn’t put down any restrictions. The personal training people still maintain that they do not think it is a good idea for me to sign up for the package I was originally interested in. I’m still trying to decide if I really want to train with these people…

*** Post-Postscript (10/1/2010) ***

I ended up signing up for three personal training sessions.  I wore my "Walk for Lupus Now" shirt to the session...

Wednesday, September 22, 2010

Is Being Chronically Ill Heretical?

(I don't talk about religion often, so humor me...)

Since my boyfriend is more religious than I am, I have probably taken part in more religious activities in the last six months than I did in the past few years, combined. This is mainly because, with illness, came a crisis in faith. I questioned a lot about my religion, and I still do, but I am trying to remain open-minded and take part.

However, I do feel that being chronically puts me at odds with my religion.

For instance, I don’t usually fast given that I have to take my medication with food. And when you look beyond the major holidays, there are a lot of fast days in Judaism.

Another example was at a service I went to several months ago with my boyfriend. He had told me ahead of time that many people sit on the floor during a certain portion of the service as a sign of mourning. In my head, I figured that I would stay seated in a chair because of my hip. I knew that getting down would be okay, but getting back up would not be so easy.

Men and women sit separately from one another, separated by a cloth and wood barrier. Through the barrier, I could see that there were a few men, of various ages, still sitting in chairs. But as I looked around my section, all of the women were sitting on the floor. I followed suit because I did not really want to have to deal with the judgment that I know would ensue. And I don’t know any of these people well enough that I would give them details of my medical history to explain why I stayed in a seat.

While Judaism dictates that you shouldn’t follow ritual at the expense of your health, that doesn’t mean that the people around you won’t judge you because of a perceived lack of observance or religiosity.

So does my being sick go against my religion? Of course, not literally. But in the figurative sense, it seems to me that from a public standpoint, my being sick limits me in a way that makes me appear less observant. But it’s not even a fact of observance. I feel like it makes me seem like I don’t care, like I’m somehow anti-religion. Like I’m thumbing my nose at ritual and tradition.

And that is not the case. One of the reasons I had stopped attending religious services when I got sick was because I felt my heart wasn’t in it, that my observance was disingenuous, and I didn’t like that feeling. So now, when I go, I try and put as much as I can into it. But I don’t want to develop social anxiety, and worry every time I go to services that someone is judging me. I know that in reality, I am less religious than most of the people that attend this particular branch of services. But I always dress appropriately, and participate to the fullest extent possible. I guess what I’m trying to say is that I’m doing the best I can.

And maybe I’m wrong. Maybe these people wouldn’t even have batted an eye if I would have stayed seated. But it put me in a very awkward position (no pun intended). I ended up sitting on the floor for about 45 minutes. And the next day, I was pretty stiff and in pain.

This situation has been eating at me, I think mainly because the judgment that I so worry about is really what goes against religion, rather than whether I stay seated or not. We are supposed to be able to be compassionate, not judgmental, and able to put ourselves in other peoples’ shoes. And yet, I can only imagine what that group of women must have thought, if I would have kept my butt firmly planted in my chair. I’m sure that they would never in a million years have considered that the reason is because I’m chronically ill and have a bad hip, amongst other things.

Maybe some people will say that the judgments of others don’t matter, regardless of what they are. And that as long as I’m doing my best, that’s what counts. But it’s hard to erase the possibilities from my mind.

And here’s another example, just to prove that this isn’t my personal problem with my religion. What about someone who has Celiac’s Disease (gluten intolerance)? What if they want to keep Kosher, but the products they have to buy, aren’t Kosher, as I suspect many of them aren’t? Certainly, from a religious point of view, I don’t think anyone would suggest that they should risk all kinds of medical complications by eating a regular diet, albeit a Kosher one. But I can imagine that they would get a lot of flack for this from the people around them.

I guess the issue really at play here is tolerance. No matter how together we try and make ourselves seem, there are always going to be people who see our illnesses as character flaws, making us seem less reliable, less together, and even less religious.

Personally, I try not to judge people based on their religious predilections, mainly because mine have been evolving. I went to Hebrew “Sunday” school from kindergarten through my senior year of high school. While I lived under my parents’ roof, I observed all major Jewish holidays. College was a time of questioning in that I didn’t feel like I fit in particularly well with any of the religious groups, although I was quite involved with culturally Jewish classes and activities. And in grad school, my health led me to a place that provided the opportunity for me to question a lot of the tenets of my life, not just religious ones.

I’m sure some people would say that I should let the judgers judge and look the other way, that if I’m observing the way my heart tells me to, that should be that.

At one point last year, I even enlisted the advice of the sister of one of my good friends, who is a Rabbi. I wanted to know what my religion said about young people getting sick, or all of the other bad things that can happen in life, that seem to defy explanation. We didn’t speak about the judgment of others, but we talked about the anger that I felt toward G-d and myself, and that maybe this source of conflict would be a way to re-engage with my religion.

And it’s interesting now to be at a place where I have begun to re-engage with religion, only to find that what I sought to get away from, is exactly what I am experiencing. Places of worship are not courts of law. I feel like they should be the one place where judgment takes a back seat. And I believe that spiritually, it does, but realistically, where there are human beings, there will always be judgment.

Don’t get me wrong. I’m not saying that rules are meant to be broken. But some of us have very real aspects of our lives that keep us from being “observant” in the traditional ways.

This year, our Rabbi, who is new, made an announcement, saying that he didn’t want there to be any heroes in the name of fasting. He said that if you have medical reasons for eating and not fasting, that you should by all means follow those. I’ve never actually heard a Rabbi say this before. I really appreciated it, even though I did end up fasting.

I guess maybe what I’m trying to say here is that what I love and most appreciate about my religion is the personal meaning that I get from it. And I guess I just wish that there weren’t core parts of me that make me feel like I can’t reconcile these differences.

Here are some questions to ponder: How do you view your religion in relation to chronic illness? How has your observance been impacted by being chronically ill?

Monday, September 6, 2010

Invisible Illness Awareness Week 2010

In honor, and in anticipation, of Invisible Illness Awareness Week (, which is September 13 to September 19, 2010, Maria of My Life Works Today and I are collaborating on a project.

So many of us have invisible illnesses, so our goal with this project is to make the invisible visible.

So what are you waiting for? Grab a paper bag, get creative, and show us your pics. Submit pics to and, and/or post on your own blog and share the link with us.

A few things to keep in mind:

- NO plastic bags. Paper ONLY.

- We know that many of you, including ourselves, may have more illnesses than fit on the paper bag, so put whatever feels most salient for you. This isn’t a competition. It’s simply a chance to get creative and take a stand against the invisibility of invisible illnesses.

Check out my blog and Maria’s ( for examples.

The inspiration for this project was taken from various website sources on the late Saul Steinberg’s work from the 1950’s and 1960’s (

You can find more of his work at the Inge Morath Foundation, Martha Stewart's website, and/or by simply searching Google images.

Wednesday, September 1, 2010

“I Love You, Don’t Touch Me”

“Oh what the hell she says
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what I’m doin’
Like I don't know now […]

And I don’t know what I’m supposed to do
But if she feels bad then I do too
So I let her be […]

And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now[…]”

- “Her Diamonds”, Rob Thomas

He wakes me up gently. I roll over so my face is buried in the pillow. He lifts up my shirt and gently rubs the ointment on my back. He pulls my shirt down and I turn back over. He wishes me “Happy Birthday” and kisses me.

Such tender moments in my relationship with my boyfriend make me think that there will never be misunderstandings, that such minor maintenance will prepare us for the potentially tough times that could lay ahead. But I know the fatigue – one of the peskiest and least understood symptoms – is something that baffles him as much as it baffles me.

Why, after working 30 hours straight to my four or six or eight, am I totally exhausted and he’s not?

But there are also things I don’t understand about him. I can’t imagine how it feels to be a doctor and lose a patient. And I want to be there for him, but I don’t know how.

So in some ways, we are even. It’s hard to watch someone you love suffer. But sometimes there is no choice, because there’s nothing in your power you can do to help the other person but be present.

You can empathize 98%, but there are some things that can’t be taught or learned. I can explain symptoms in ways to try and make him, or anyone else, understand, but at the end of the day, I’m the one who has lupus and rheumatoid arthritis, and only I know 100% how that feels; just as only he knows how it feels to take care of a patient, only to have them die.

Life is a funny thing, as it only prepares us so much for our own hand, so to try to begin to understand someone else’s is a feat in and of itself.

My boyfriend told me several months ago that he had read my blog. He told me that he cried, had to walk away a few times, and that there were so many times he wanted to call me in the middle of the night to talk about things I had written. He said that because he’s a doctor, he knew what lupus was, but he could never have imagined what it meant for my life. He told me that I’m one of the strongest people he knows, and stronger than anyone should ever have to be.

So mostly, there is just love. And the act of being in the same room together is enough. Because there are times when I just want to say, “I love you, Don’t touch me.” Even though that kind of feels akin to “It’s not you, it’s me,” it’s true. There are times when I’m in pain, and the slightest touch will make me wince, or I’m so exhausted that the thought of expending any kind of energy at all is unfathomable. There are times when love has to be enough because that’s all either of us can provide in that moment, because we are ill-equipped to deal with the other person’s suffering.

Never, in my darkest moments over the past few years, could I have ever imagined that I would meet someone like this, someone who sees me for me, beyond illness, and who is willing to stand by me, no matter what.

Because when you get sick, you think that you’re never going to find anyone to love you. And then you meet that guy. And you love him, and he loves you. And honestly, every time I think really hard about this, I cry. Because I’m so happy, and I can’t imagine what my life would be like without him. Because even the worst days are made just a little bit easier because he’s there.