Before I sent my book, Despite Lupus: How to Live Well with a Chronic Illness off to be published , I decided to share a few chapters with my rheumatologist. He's been supportive every step of the way - but I don't think he knew exactly what I was up to until he started reading the text. I think he was really surprised by my story! He's as intimately familiar with the myriad symptoms I've dealt with over the years as anyone and yet, in his words, he had no idea how devastated I was by the disease. He didn't know how scared and vulnerable I felt with the diagnosis. He knew that lifestyle changes were involved, but he didn't know how difficult it was for me to make those changes. Here's hoping that the book enlightens others on the effect a disease like Lupus has on people like us!
I have a couple of theories as to why he might not have been clued into the devastation involved:
1) I tend to put on a good show. Even with my doctor, I prefer to be as bright and cheery as possible. Not because he asks me to, but because I expect myself not to show any signs of wear and tear. I find it much easier to act strong and courageous, even when I don't feel like it. I know it's not always right - but it's my default behavior. Over the years, I've been working on honesty - especially with myself.
2) I look forward to my appointments. When I'm feeling crummy, I practically count down the days from one doctor's visit to another. It's all I can do to wait until I can unleash my latest symptoms on my doctor so that he can then come up with a new plan of attack to alleviate the pain or suffering I have. It's been a long time since I've been that sick - but I imagine the show of relief on my face during past appointments could have been misconstrued as contentedness.
3) Explaining physical or emotional pain isn't easy. Even when you tell someone you're hurting, unless they've experienced the same symptoms you have, they'll never fully understand exactly what you're going through. It's not my doctor's fault (of course), it's just the way it is. Thank goodness for support groups!