I think some people think I'm a total jerk because I cancel plans at the last minute or I'm reluctant to make permanent plans just to avoid having to cancel plans at the last minute. I'm not a jerk! I'm sick!
There are times that friends or family will bring up these great, exciting plans... and I sit there with NO reaction at all. This is because I'm totally conflicted! On the one hand, I want to jump up and down and tell them what a great idea they have and how excited I am about it. Then reality sets in, and I think to myself...
- What if I'm not feeling well that day?
- If I do too much the day before, will it leave me with no energy or put me in pain?
- How far will I have to walk?
- Will there be places to sit? (Don't even get me started on the lack of benches in this world).
- How long will I have to be on my feet?
- How long before my back (or legs, or some other shitty body part) starts to cramp or ache?
- Do I have to get dressed up? ...because currently I'm in sneakers...have been for a couple of years now (I've had arizona braces for both ankles)... and will be for another 6-12 months at least (assuming I can start wearing regular shoes again after my ankles are healed up). No girl wants to be dressed up and wear sneakers.
- Do I have a ride home in case I need to leave early because I'm in more pain than I anticipated?
- How far do i have to travel?
- Do I have something important the next day? If so, then I'll have to cancel one of them.
You see the dilemma.
Dealing with chronic pain is one of those invisible illnesses that many people just don't understand. If you don't look sick, then they assume you are fine. You should see the looks I get when I go to Disney and rent those mobility scooters. If I'm in shorts, and you can see both of my 6 inch knee scars, then people seem to be okay. But when I'm wearing pants, I just look like a healthy jerk who is too lazy to walk around the parks. Luckily, the employees at Disney are awesome and never make me feel jerky...I love you Disney!
Same thing happens when I use handicapped parking...which I try not to use unless I'm having a bad day. People see some goddess (okay, that MAY be an exaggeration :D ) coming out of the car and think I swiped my grandmother's handicapped tag because, again, I'm a jerky lazy piece of shit. Well, I'm not a jerk, I'm sick!!
I was telling a friend the other day that I actually felt more comfortable going out after my surgery when I had my walking boot. People can see the boot. They're used to seeing many people who are “normal” people who have injuries wearing the boot. To them, maybe I just hurt my foot while kicking ass on my roller derby team. Yup, that's the story I should start peddling LOL. Now that I'm in an aircast and pants, you just see me walking with a slight limp (which is almost gone...working on it!). Nobody holds doors for you or gives up their seat for you unless you look injured or crippled. I speak from experience.
Do my friends and family understand my chronic pain? Well, my very close friends understand...like less than a handful. As far as my family...sadly, not a lot of them do...but they try. I really think the only people that really “get it” are fellow sufferers and the people that you live with, who see you suffer day to day. It gets frustrating at times but maybe by sharing some of this it will help, even in the tiniest bit.
Recently I was introduced to a website that was started by a woman who has lupus, another one of those invisible illnesses. It's opened my eyes to that fact that it's not just me who's having these experiences. She has this great “spoon theory”, which is one of the best explanations for invisible illness I've come across. I encourage everyone to read it in hopes that the more people understand, the more empathetic and less judgmental they'll be. And that would make a better world.
Anyone else suffer from an invisible illness? Do you find people think your being jerky? How do your family and close friends treat you?
PS--I really want a shirt that reads, “I'm not a jerk! I'm just sick”. You hearing me Santa!