When I walk into a room of lupus patients, you know what my first reaction usually is? "This isn't a bad looking group!" You know how it goes - we don't look sick, we don't even act sick most of the time...but those of us who have lupus know just how misleading our outward appearances can be. Our insides may be falling apart, our bodies ready to crumble to the ground - but if we don't look the part, it can be a hard sell to friends, family, and co-workers.
I remember, after a summer of sickness several years ago, a client came into the office for the first time in months. He took one look at me, and said, "You look great! Have you been running a lot? It looks like you're training for a marathon!" (Lupus does wonders, right?) I replied that, no, in fact, I'd been pretty sick, and he said, "Well, you look great. Keep it up." A week later I was admitted to the hospital for severe anemia, had a blood transfusion the first night I was there, and suffered a bout of pancreatitis that left me 10 pounds lighter than I already was. Eek!
(Now, as an aside, as frustrated as I could have been by the client's comments, I wasn't really bothered. You know why? Because my client was trying to be nice. He was attempting to pay me a compliment. No, he wasn't listening to what I was saying, but I didn't expect him to. I believe he's one of those that belongs in the last category that I talk about in my book - don't bother explaining, because they don't really want to know. And as far as I'm concerned - that's okay. Everyone you meet isn't intended to be your greatest chronic illness confidante. You can't share your trials with lupus with just anyone. So pick and choose your supporters well, and then just brush off the other guys.)
The other one I get because I don't look sick is the old "are you a drug rep?" routine. About once a year, I'll be minding my own business, waiting for my name to be called in the doctor's waiting room, when a pharmaceutical sales rep will come in the door, take a look around the room, and say something to me, like, "Is he seeing us today, or does he have too many patients?" The first time it happened, I didn't really get what was being said. Now...I get it.
Now, I can't deny - I don't mind being put in the "marathon training" category, and it definitely puts a smile on my face to think that I don't look sickly enough to be in the doctor's office as often as I am. But when we don't look sick, we can't lose sight of the fact that we may still be sick...and that we need to do whatever it takes to stay well, regardless of what others think.
What do you think that drug rep would have thought if he'd seen me pulling out of a handicapped spot at the doctor's office?
What if my client saw me at the airport, being pushed to the front of the security line in a wheelchair?
What if my friends didn't understand why I couldn't attend the afternoon party because it conflicts with my nap?
I'm here to tell you that the answer to all of the above has to be, "Who cares?" The fact that others might not think we're sick cannot prevent us from doing things that we need to do to stay well. We have a responsibility to ourselves not to let it.
Believe in yourself - you know your body best - if a wheelchair helps, use it. If a nap is necessary, take it. You have to learn not to care what others think. That's rule #1 in living well, despite your chronic illness.
So the next time you need help with something, but you don't look like you do - ask for it anyway. Maybe you can educate someone while they're assisting you.
And if you can't pick up the kids because you feel crummy, but you don't look like you feel crummy, ask someone from the carpool to help out anyway. Set a good example for your kids and take care of yourself. Wouldn't you want them to do the same?