I have a shameful secret. Sometimes I want certain others to experience my pain.
The old "Walk a mile in my shoes" fantasy rears its ugly head. Not for sympathy. Though sympathy is a good thing, in moderation, it sometimes makes me feel uncomfortable - like I'm being a whiner.
When I'm short on patience with my kids, 9 times out of 10 it's because I'm in pain. Then I find myself wishing they could know how I feel so they would just please cooperate. When I start making mistakes at work, 9 times out of 10 it's because I'm distracted by pain, fatigue and/or just plain brain fog. The only perk scleroderma has besides the free face lift is getting to blame these things on it. So, I will. If I have to put up with scleroderma then I at least deserve the perk of getting to use it as an excuse for my lameness now and then.
What I'm in the market for is understanding. Not just for me, for everybody. Too many people are too quick to judge others based solely on first impressions, or the way one dresses or one's mood on a given day or even a single comment one makes. There's always a reason for everything. And nobody knows everything. So what gives anyone the right to judge someone else based on so very little knowledge of anything?
I am reminded of when I was talking with an acquaintance from high school many years after graduation. She said she thought I was stuck up in high school because I never talked to anybody. Truth is, I was shy and easily intimidated. About the farthest thing from "stuck up" as one can get!
First impressions are usually, in fact I'll say, almost always wrong. Nobody knows what someone is really like until they spend time getting to know them. Just like nobody knows what scleroderma or any other illness is like until they've spent time getting to know it.
I think it would come in handy (for us) if our doctors and caregivers could experience our pain so that they could know how to better treat us. After all, they have all the knowledge of doctoring and caregiving, the only thing they don't have that would make them true experts is the knowledge of our pain. Without that, isn't it really just a guessing game for them? They have to rely on on our testimony, which must be accurate, so that they can order the right tests and prescribe the right meds. Wouldn't it be great, like in a sci-fi show I saw once, if our doctors could simply lay their hands on us and know all that we are feeling - physically and emotionally - in an instant? Okay, I'm getting out there now...
Back to my soap box speech on understanding. In a nut shell, people need to give people a break and think twice before judging and labeling and jumping to conclusions. The grumpy person on the other side of the counter may be in constant physical pain. The quiet person may actually be shy, or sad. The angry person may have lost a loved one. Nobody knows anything about anyone until they've spent some time getting to know them and/or walked a mile in their shoes.