Tuesday, March 20, 2012

How to fake having a real life

So there you are... a good health day has actually happened on the same day of a nice social event you want to go to. You dress up all spiffy, get your game face on, and head out to the party. You get there, everyone is talking and making chit-chat. Suddenly, someone turns to you and asks you, "So... what is it you do?" PANIC TIME! Do you let this stranger in on your world of health problems? They might look at you like you're contagious and walk away, or possibly worse, start giving your unwanted advice! Healthy people want to talk about your job (which you may not have), hobbies (which you may have had to abandon), and interests (which may be totally health-centered because you're hunting desperately for answers and solutions). What do you do?!? Well, one way to get through is to fake it. In this article, I will discuss three ways to talk about our health that make it seem like we have a real life.

1) Act like you're a volunteer.
In this instance, think of yourself as a volunteer forwarding the Grand March of Scientific Progress: "Well, I'm involved in health research looking at the long term effects of [name one of your medications] on patients with [name a related diagnosis for the medication]." Now doesn't that sound a lot sexier than, "I deal with nausea all day for which I take phenergan." They'll be fascinated, even if they have no clue about the diagnosis or medication you've rattled off. They'll want to know more: "Oh? What does that involve?" Don't lose your cool. "I meet regularly with doctors as part of a long-term follow-up studies." or "I take part in post-clinical trials. We discuss medication side-effects and other patient issues." Both answers say that you're a study participant. Technically, this is absolutely true. If you have problems with a medication, doctors will report their findings. It doesn't matter that you're a patient as part of that process. Let them guess that you're doing this out of the goodness of your heart. But they'll probably be a bit curious: "Do you actually take the medication?" Just smile with confidence and say, "Oh yes, but it's all under the close supervision of a doctor. And if it's for the advance of science, I don't mind the risk." Now you sound noble and brave.

2) Act like you're a professional.
For this one, you're not trying to impersonate an actual health professional. Rather, consider your experience as a health patient in a professional light. Talking to other patients online? That's networking. Blogging about your experiences? That's freelance online journalism. Let's take a look at that dreadful question again: "So what do you do?" That question can be followed-up with something like: "I work with outreach programs for patients suffering from [name your diagnosis] in online communities." Which translates from: I greet folks online when they join the health board I'm on and make them feel welcomed. If the party-goer wants more information, you can say something like, "Part of it includes patient education and patient empowerment... Helping people find online resources so they can then help themselves... That sort of thing." Which means: I share with people about our symptoms and point them to cool websites I've found. If they press you for details, you can say something like, "One common issue among [diagnosis] patients is [symptom]. We deal with this by taking a hands-on, team approach leading patients through self-care processes they can do at home. Sometimes we're able to recommend possible treatment courses they haven't tried that they can bring up with their doctor." Which means: I talk to other patients directly (online) and we talk about self-care we can do at home. We exchange ideas about stuff we have heard of and/or tried. Now all that talking on Facebook and in online communities sounds glamorous and self-sacraficing.

3) Act like you're an activist.
If you do anything involved with signing petitions to get the government's help with health care, you can say: I'm involved in political activism for health reform. When they ask questions, you can tell them about the challenges facing patients with your disease, and about the petition you signed. It always helps to do your homework on what you signed so you can easily talk about the details. Know what the goals of the petition are, who the sponsors are, and how many signatures are currently on it. "I checked quickly just before I came here, just to see how we're doing, and we're up to..." sounds very pro-active and high-minded. Look up other political activity around your disease, even if it's in other states. It sounds very cosmopolitan to be able to say, "Did you know in Florida they're addressing this by..." Or even more worldly still, "In Germany, they're looking into...". It's also great to be able to mention a celebrity who has your condition and the kind of things they're involved in for your disease. You can also look up news stories related to you disease, so you can say things like, "There was an article in the New York Times just the other day on..." Google is a wonderful tool. Now you sound informed and well-read.

So there you are! Three ways to fake having a real life, even if most of your time is taken up dealing with symptoms, doctor's visits, treatments and other god-awful necessities of a chronic illness. I bet you didn't realize your life was just that cool! Seen from the proper perspective and framed in the proper way, you too can make this look awesome!! Healthy people will never know the difference. (Unless they get wise to this article. So, shhhh! ;)

Enjoy the party!


  1. Fantastic ideas :-) You sound like a professional resume writer :-) I must not socialize that much as I haven't been asked too many of these questions but I am hoping to be getting out into the world and doing just that....socializing :-) And oh yeah, doctors don't have to report any side effects of medications their patients are experiencing...only hospitals have to report deadly side effects in fact. Our reporting system is a voluntary program in the U.S. Scary but true.

  2. Oh, I have dabbled ;)

    And I know the reporting is voluntary, but most of the doctors (at least specialists) I've worked with have been active in their field, networking with other doctors about this, and the other. It doesn't happen at the GP level so much. But with folks like us who have the *difficult* diseases, you may be impressed with how much your doctor does behind the scenes. I know my endocrinologist and neurologist in Seattle were wonderful about this.

  3. I do love the delightful way you created this 'real life' act. I can identify. When asked 'what are you up to these days?' I am embarrassed to admit what little I do compared with what I used to do. Anyone who hasn't seem me for a few years would be expecting some interesting stories and fabulous projects but no, not anymore. However, it is still a life, it is my life. I can still love and laugh and listen to a friend who needs someone to talk to. I can still tell my grown children that I love them and I am so proud of them even though I can't physically help them out much of the time. Somewhere in all of this 'not much of a life' I am still me and I am still living, all is NOT lost! But oh that was fun to read today.

  4. "Anyone who hasn't seem me for a few years would be expecting some interesting stories and fabulous projects but no, not anymore."

    Exactly. Then if you do tell them what's going on, they look at you like you're a leper! lol

    Yeah, my 20 year reunion is coming up and I'm feeling the pressure!! I was in so much pain for my 10, I was only able to pull off one night. This year may be better, but lord. I've done *nothing* but battle this thing for the last ten years! How am I supposed to make small talk? Yikes! lol