"So are you feeling better?"
"Have you been able to get off your meds yet?"
"Get well soon!"
Sometimes it feels like everyone is asking the same thing: "Why aren't you better yet?"
I used to look around me in amazement, and a little envy, at all the healthy people who continued to live their lives they way they wanted while I had this whole new reality of life with a chronic illness shutting me down.
Over these past few months, especially since I started doing research for
Sick & Tired, I've been surprised to know that a lot of those people were just like me--people who didn't look sick, but inside struggled with a barrage of symptoms that were difficult, discouraging, and sometimes debilitating.
If the statistics are true, about half the people you look at within any given moment are sick just like you. Most of them don't look it. Some of them rested the entire morning just to be present wherever you are, even if it's the grocery store. Some need to get home soon so they can eat or take pills or get a shot before they crash. Some are functioning under a discouragement more painful than their worst physical symptoms.
So, in recognition that there are a lot more of us out there than most would think (even us!), instead of asking the kinds of questions that make us want to scream, eat a carton of ice cream, or hide from the world, I'd like to ask a few questions you can actually answer. The following come from the discussion questions in
Sick & Tired, due for release June 26th. I'd love to hear your answers below, and you might enjoy actually getting to share them without someone saying, "Have you tried __________?" or, "If you'd just exercise more..." or "Can't the doctor do something?"
So here you go. Take your pick of one or two and answer in the comments!
From Chapter 1 Joining the Club Involuntarily
When did you first approach a doctor with your
symptoms? Did he take them seriously?
Chapter 2 So What’s Your Problem? – How to explain your condition with confidence
Do you feel like people don’t take your condition
seriously because it isn’t diagnosed yet, or is an “invisible” illness
like fibromyalgia or chronic fatigue?
Chapter 3 Sit
Down and Cry About It – The real and
important process of grieving your loss
How did you feel immediately after hearing you had a
condition, or when you realized your symptoms were not going to go away?
Chapter 6 When the Well-Meaning Annoy You – What to do when you’re ready to snap
What phrase do people say that gets to you the most?
Chapter 10 The Belief Test – Can
chronic health problems be a gift in disguise?
Do you believe God could take away your condition if
He wanted to, so since He hasn’t there must be a reason?
I hope it feels good getting to share in a place where you are believed and taken seriously. One thing I love about the internet is how it gives those of us with chronic illness a place to develop and maintain friendships without having to go out and get exhausted. We can chat with friends from home, while still in our pjs if we want. =)
 |
| Um, if your pjs look like these, please don't tell me. |
I'm looking forward to reading your answers, and feel free to respond to one another!
And if that doesn't encourage you enough, I'm adding below a sneak peek at Sick & Tired. Enjoy!
Introduction
Be careful about reading health books. You
may die of a misprint.
Sometimes I want to slap a sticky
note on my forehead that says, “I am sick. No, I don’t look sick at this
moment. But I am not faking having a disease just because I’m not in a
wheelchair, and I am not a freak.”
Now,
I am aware walking around with a note like that on my head would actually put
me in the freak category. Not to mention all those words would only fit on a
Post-It note if I wrote it very, very small, and then people would have to get
really close to me to read it, and that might just put me over the edge. I’m
really into my personal space.
The
thing is, I don’t like talking about having chronic health problems that
interfere with my life. I don’t like the way people look down, over, and around
me when they realize I have a chronic illness. Or worse yet, the suspicious way
their eyes narrow when they decide it’s all in my head, or I’m a hypochondriac.
Why
does it bother me to tell people I have health problems? Doesn’t everybody at
some point? I suppose that’s the crux right there. For most people, the
difference is in the “some point” part. They have a problem. They go to the
doctor. Doctor fixes it. Life moves on. It was a small, annoying inconvenience.
For
me, and likely for you since you’re reading this, your problem is not so
temporary. You’ve got it for life, or until science finds a cure, which for
some diseases is as likely as winning the lottery when you haven’t even bought
a ticket. So we make people nervous.
Nobody
wants to have a condition that affects their social outings, work choices,
family life, and just general day-to-day stuff. Nobody picks that for what they
want to be when they grow up. “Oh teacher!” The kindergartener excitedly raises
his hand. “When I grow up, I want to have a chronic illness and have people say
how strong and courageous I am for enduring it even though I don’t have any
choice in the matter! Woo-hoo.”
Instead,
Americans spend billions trying to avoid anything that even smells like
sickness. Our country has enough pills, vitamins, and herbal remedies to make
you sick even if you started out healthy, or at least to make your urine turn
neon yellow—which is an interesting phenomenon, though likely not worth all the
money it took to make it happen.
We
all desperately want to be well. And why not? Being well means you get to be as
active as you want to be and in charge of your own daily schedule: How much
sleep to get. What to eat. What job to choose, or how many children to have.
For
those of us with chronic illness, we’ve had to give up some or all of those
freedoms. And they probably didn’t seem like freedoms at the time. We likely
took them for granted until our bodies took them from us. Now here we are,
active brains inside limited, broken bodies. But as technology has yet to
create a way to get an entire body transplant, we’re stuck with it.
Unless,
of course, you have a neurological problem, as I think I might, in which case
I’m sorry about your brain. Getting a brain transplant is a seriously bad idea.
You would not even know who you were, and would not appreciate how much better
you were feeling.
I
would like to trade in my health problems and be well again. I sometimes think
that would be getting my life back. But the truth is, this is my life, and as I
have come to (almost) accept that fact and make the best of it, I think there’s
hope for me.
Maybe
not to cease being a freak to some, but to cease seeing myself as a victim, as
a traumatic case, or even as a lesser being because of my illness.
That
being the goal, maybe I’ll remove the hypothetical Post-It note from my
forehead and put it in my back pocket, to be removed periodically and waved in
people’s faces only when I’m having a tough day.
It’s
a start anyway.
