Monday, October 6, 2008


When I first got diagnosed with RA, aside from APL and a couple of friends I saw on a regular basis, I literally hid from the whole world for a couple of weeks. For some reason, it was extremely difficult for me to tell people about the diagnosis, probably because it required me to explain all the unpleasant details I hadn’t even figured out how to accept for myself. Not to mention that telling someone you’ve been diagnosed with a degenerative and painful autoimmune disease is generally followed by an onslaught of well-intended pity that only ends up making you feel worse. So, somehow the courage to be honest with people – even people I really care about and who I know care about me – eluded me for weeks.

On the other hand, interacting with people who didn’t know about my diagnosis also seemed impossible. I felt like my life had been flipped upside down and inside out. Everything in my world revolved around figuring out how to deal with the RA, so how on earth could I talk to someone who knew nothing about my diagnosis? How could I talk to them at all if I didn’t have the courage to tell them? The ideas I came up with for answering the innocuous “how’s it going?” without mentioning RA were basically downright lies. So I hid. I withdrew myself almost completely from interaction with the world.

After a week or two I was desperately lonely. I realized I had to let people know so that I could build a support system to help me get through all of this. But, for some reason, I was still having an extremely difficult time making the words “I’ve been diagnosed with rheumatoid arthritis” come out of my mouth. So I told my mom, and I asked her to tell the rest of the family. I found it was easier to talk with people once they knew about the RA, even if I wasn’t brave enough to tell them myself. My mom told my sister and brother and my aunt. My aunt put me in touch with my cousin, who also has RA. And my support system slowly started to grow. With a little practice, telling people started to get easier. Or, at least, it wasn't quite as hard.

One particularly bad day in July, feeling lonely and sick and dealing with a great deal of pain, I finally managed to email a few friends from high school and college and tell them about my diagnosis. I’d like to think it was courage that finally got me to send those emails, but in reality it was probably cowardliness. I was afraid of what would happen to me if I kept trying to deal with this alone. Either way, I was immensely relieved that I had gotten my out-of-state friends involved.

A dearly loved college friend, AJ, offered to gather a posse to attack RA! She said we would fork its yard! Tie-dye its lawn with froot loops! Give it a wedgie in the hall! Put vasoline on its doorknobs! Her humor and enthusiasm lifted my spirits more than I can say. But when I explained to her that my hands were in such bad shape that vasoline on a doorknob was actually terrifying because it could lock me in a room for eternity, she got a bit more serious with her suggestions.

AJ suggested that I start a blog. Originally, I wasn’t so sure about it. She has her own blog, called “A Taste in the Life” (it’s listed in “My Favorites” to the right). She is a fantastic writer; she studied it in college and now she writes for a living. And since her engagement at the beginning of August, her blog has become a hilarious account of the trials and tribulations of planning a traditional southern wedding while keeping her own modern flair. It’s basically guaranteed to be an entertaining read and it is always uplifting.

I didn’t think any blog I wrote would be like that. Mine would probably complain about how much my body hurt and how despondent I was feeling. Who would want to read that? But AJ patiently explained to me that she didn’t start writing her blog for anyone else – she started it for herself, a form of cheap therapy to work out whatever was spinning around inside her head. She said she thought that would be good for me. She said I wouldn’t have to show it to anybody if I didn’t want to.

So I took her advice. One afternoon I sat down and starting writing and here it is. I have to admit that even if these posts are a little depressing or frustrating to read, working through these issues paragraph by paragraph has actually helped me to relax and settle my mind a bit. So I think writing the blog has been a good thing for me. The only weird part has been the issue of who to share the blog with.

At first, I only shared the blog with APL and AJ. AJ said she was proud of me for starting the blog, but that she wouldn’t list my blog on her “favorites” if I didn’t want her to. This led me to a very weird realization: it wouldn’t bother me if she listed my blog on hers because anyone following that link would be a total stranger to me. That means the thought of anonymously telling my problems and fears to total strangers didn’t bother me. The part that actually scared me was the idea of sharing my problems and fears with the people I know and love. But that made no sense at all! I’m afraid to tell my own friends how much I’m suffering? I don’t want my own friends to know how scared I am? Why not?

It made me start thinking about the “non-judging” attitude from my Mindfulness Class. Maybe, just as we are constantly judging ourselves, we are constantly judging each other. Dealing with RA makes me feel weak; like I’m somehow less than myself. Was I worried that my friends would read my pains and fears and judge me? That it might change their opinion of me? Because, the truth is, ultimately my friends may need to change their opinions of me in order to begin to understand everything I’m going through. If I want to have them there to help me through this, shouldn’t they know what is going on with my body and inside my head? With a better understanding of this RA conundrum from all perspectives, maybe we can all find a better way to help me handle it.

Unfortunately, lack of courage is still the issue here. I came to the conclusion that I should share my blog weeks ago. But for seven previous posts I somehow wasn’t able to find the courage to let my friends and family know that this window into my life even existed. I’m still not sure I have the courage to do it, but I’m going to do it anyways. As the Cowardly Lion said, “If I only had the nerve.” So here’s the nerve: right after I publish this post, I’m going to send an email to my friends and family with a link to this blog and tell them that, if they are interested, they are welcome to read it. It isn’t a cry for help and hopefully it won’t lead to any unfair judging about what I’ve been going through. I just hope it will increase openness and understanding with the people I care about and make it easier for all of us to get through this. I never really understood this phrase, but: here goes nothing.


A said...

Team Z! Proud of you for getting the cowardly lion's nerve. I mean you've already got the brain(scarecrow) and the dog (dorothy), the heart (tin man), so all you need now is a pack of flying monkeys and I'd say we're good to go.
Glad you like my writing... I'm off to write about a crazy wedding planner and a make up artist who turned me a royal shade of orange this weekend for a friend's wedding. Heaven help us.
Write on, sweetie!

~kelly marie~ said...

I am so amazed by your courage to put this out there. I have never been able to be so frank with other people. I am so glad that you have such supportive friends out there. It is such a blessing to have that. I can't say that I've been as lucky with many of my friends and family, but I have a feeling that it will be different for you. I learned this the hard way, but don't ever let anyone make you feel badly for putting yourself out there. I know how much courage this must take. I should try to learn from you and write my own feelings down.
Thank you so much for sending this out. :) I look forward to reading more.

~Mariah~ said...

Thanks for your support, girls!