Friday, March 13, 2009

Life with Lupus a challenge? You bet!


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!

6 comments:

ann bradford said...

Oh my goodness... you express what I feel so well. I've just recently been diagnosed and am trying to find the right way to "be" with, not only doctors, but other people in my life. It's always been my personality to put on a cheerful face but then people don't understand why I have to cancel out on plans so often; why I can't take on commitments like I use to; why I'm not the supermom I used to be (or try to be, more likely). It's so nice to know that isn't something I'm experiencing alone.

Sam said...

I really look forward to reading this.

Sara Gorman said...

Ann - I'm so glad you can identify with what I wrote. It makes me feel good, too! Best of luck with the diagnosis - I'll try and post a few more thoughts on dealing with others in the coming weeks. I have a whole chapter devoted to it in my book...although I probably could have written several more on the subject!

Take care and look forward to hearing from you again.

Sara Gorman said...

Sam - Can't wait to hear your thoughts!

Have a great weekend.

MaNouvelleVie said...

I will have to keep an eye out for your book. I enjoy reading your blogs as I can really relate to much of the feelings you have about things. I just recently posted a blog about Support groups and how it's important to have one because even though we have our families, friends, and doctors, none of them can relate to what we're going through. Kudos to you girlfriend!

Sara Gorman said...

Aren't support groups fabulous? I know that it can take some time to find the right group with the right mix of people before settling in - but thankfully, mine was great from day one.

Thanks for stopping by.