Friday, June 5, 2009

The Continuum Of Disclosure

Lately I’ve encountered several people who have asked me to be candid with them about my illness experience. While this has been a welcome change from keeping a lot of the gory details to myself, it has also been something that has caught me off guard.

I sort of have to look at these people and say, “Are you for real?” Like, do you know the mess you’re voluntarily walking into? And are you absolutely sure you want to make that move?

On my blog, I would consider myself to be fairly open about my illness experience and the feelings and emotions that come with it. I’ve been working with some great people at the health center on campus to try and raise awareness about chronic illness and provide resources for students who may be suffering in silence. The result is a web page that was released this week:

You can find my story there. And this doesn’t bother me – I wouldn’t have put it out there if I didn’t want people to read it. But I think if you talked to me in person, you would see that the way I talk about illness, generally, is very different.

And recently, I decided to import my blog posts to Facebook as notes. For me, I figured that this would help get some friends connected who wanted to follow but not subscribe (or whatever). The unexpected consequence of this move is that many others have started reading, as well.

I never realized that simply putting a link in your info doesn’t do much, but when you are flashing information in people’s faces, they actually start to take notice. Oops…

The thing I’m realizing is that disclosure works both ways. There is a level of disclosure I feel comfortable with, and then there is a level that the other person feels comfortable with. And admittedly, sometimes those two don’t map onto each other. And this is where the trouble lies.

There are the people, who no matter how many ways you explain, are never going to get it. Then there are others who will do research on their own, learning as much as they can so that they can speak the same the language.

To my mind, there are four general “discourses of disclosure”:

1. “I’m sick”
2. “I have such and such illness”
3. “I have such and such illness, and this means…”
4. “You asked for all the details, so I’m going to give them to you”

For me, personally, I find number one to be kind of lame. When you say that, people think you have the flu, and it just causes problems later. If I can’t tell people that I have lupus and rheumatoid arthritis by now, I’ve got other problems than illness that I should probably be dealing with.

I think, together, two and three make up a comfortable middle ground, at least for me. If I do mention more than just saying I have lupus and rheumatoid arthritis, the party line is something like, “Lupus affects your organs and rheumatoid arthritis affects your joints. It’s a pretty awesome combination. I highly recommend it.” Yes, I’m glib. But these days, that’s how I roll. If I take it all too seriously, I just get depressed.

Number four is, admittedly, used sparingly, and usually is only utilized when someone requests such information. I would never spew all the detailed garbage about my illnesses without someone asking first.


Because it ain’t sexy – and it isn’t always easy for me to talk about.

I think there is a level of maturity that comes not only with being okay with others self-disclosure, but being okay with it from yourself. Admittedly, my 20-something friends don’t want to hear about these things. I wouldn’t have either, until I got sick.

And it’s scary to talk about pain, and to try to explain to someone how you really feel when you are at your worst. It’s scary because the instinct is to pull back, and not offer too much, which in the end usually means offering very little.

But the one question I have a really hard time answering regards what I do when the pain is unbearable? I mean, there are practical things like taking a hot bath, or putting numbing gel on the area that’s in pain (or taking ibuprofen if you’re not on any other steroidal compound). And then there are things like contemplating breaking mirrors…or worse…and those aren’t the kinds of things that most people want to hear about. And they aren’t thoughts that I’m proud of and share readily.


I went shopping with a friend this week. And after a few hours of carrying a light load of bags around the mall, my shoulder hurts like crazy. It feels like someone is picking me up only by the small amount of skin at the top of my shoulder and pinching the nerve, and it feels like someone is running the bone through a paper shredder. When I’m home later trying to read, I can’t hold a book with that arm. When did the mall become a dangerous expedition for my body, and not just my wallet? When did being able to hold a book become a small luxury?

Usually I suffer in silence. I don’t try to paint the vivid picture that I just did above, verbally to anyone. Would anyone understand? Part of me thinks gosh, I really hope they don’t. Because inevitably, the people who are exposed to number four, the purge, are also sick, or have had first hand experience with someone who is/was sick.

Life, especially life with illness, is a learning curve. I am constantly learning to adapt to life with an unpredictable, ever-evolving set of illnesses. And it’s not easy. And finding people who want to know and understand is rare. So I’m realizing that when I find those people, I can’t be quick to let them escape. While it’s easier to hold back, and provide the requisite, I’m fine, it’s liberating to have that go-to person who you can tell that you feel like shit, and they’ll help you through it.

What characteristics, aside, usually, from personal experience, do such people have? I’m not sure. I can’t say what makes some people stay when things get bad, while others run the other way. While I think that empathy and compassion are part of it, I don’t think it means that people who can’t handle the details are lacking such qualities. It simply takes a special kind person, and I hope that such people, whether they are in your life or mine, know the good they are doing and the invaluable outlet that being able to talk about such issues provides.

(And don’t you just love my stick figures? Wondering why I haven’t drawn before? Because my lack of drawing ability is rather disgusting…)


  1. Well are being very candid with this post...but that is okay. It is well put and I enjoyed (also related to) it.

  2. As someone who was diagnosed with SLE at 20 something 30 years ago, I really appreciate your reflections. And I was fortunate enough to have a long time good friend who was going thru different but equally challenging chronic health issues at the same time. There were times we would call each other up in the evening and basicallly just moan to each other... We are still good friends, and our children are good friends.

    I wish you all the best.

  3. Hi Leslie,
    I found you through Harmony.
    Thanks Harmony.
    I have read and written so many pages just like this one, so I think I have tough skin and - yada,yada.
    But yeah you made me cry, anyway.
    It's just so amazing to read my own horrible experiences (like the shopping and trying to hold a book!) here in black and white. And we have never even met--how did you know? Haha.

    I have found little of that compassion that you mention, but I did write about that last week,too. Um, it was- oh yeah"use it or lose it" if you want to read it.
    Anyway, thank you and I do like your stick figures.

  4. How much to disclose and when is something that has changed hugely for me since I was diagnosed with cancer nine years ago at age 27. Cancer, I assume, is a whole different disclosure game, because everybody knows somebody who had cancer, so everybody thinks they know exactly how you feel, what you are going through, and just the right kind of hope to pass along to you - as if I'm in need of hope to begin with.

    At first I was very out about my cancer. But what changed for me was writing a book that just came out a few months ago - Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s (yes, I hope you'll buy it because I get emails all the time from chronic illness patients who don't have cancer but feel the book was written for them. It's in all the big box stores and on Amazon. Excuse the solicitation - I digress).

    So you'd think that writing a book about cancer would be the big billboard of my life, but when I was faced with my illness as words on a page, I became so much more selective about how much I wanted to reveal. I also interviewed a lot of young cancer patients who chose to be quiet, sometimes even secretive about their disease. And I decided to try it on for size, and liked it.

    I am now much more interested in talking about my illness to complete strangers – I want the woman at the makeup counter to know that I’m allergic to everything since my treatment because I want her to say “Wow, young people get cancer?” That’s education. That is public health advocacy. Spilling to my friends or acquaintances the blow by blow of my lead up to a scan is, on the other hand, something that I now keep much closer to my chest than ever before.

    Great post. Found you through Duncan. Hope to read more.