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...


  1. Wow, big jerks!! You should contact the disability service's and let them know they are discriminating you!

  2. How infuriating! I recommend wearing that lupus shirt to every darn session.

    It's so annoying that they think you need approval to do things - they obviously don't understand that we weigh those decisions a lot more than the average customer off the street and are likely more prepared because of it.