Today I did something rather difficult. Today I did something I thought was pretty brave. Today I came clean to my extended family about my diagnosis. I also asked for their support. In June, I will be participating in the Bike MS: Chesapeake Challenge 2012, a 30 mile bike ride with the National MS Society. The whole point is to raise funds for research in order to (hopefully) cure MS and to give money to help those living with MS. So I asked for their donations. It was hard for me to do, but I needed to keep them all in the loop as well.
You may not know this, but I come from a large family. My dad has 6 brothers and sisters and my mom has 8. And then most of them are married. With children. And grandchildren. A VERY large family. So I sent letters to as many of them as I could, mostly via email. This was hard for me. I felt a little exposed, a little vulnerable. While I knew that they would be supportive, I also didn’t want to come across as just angling for their money. Also, I don’t really like talking about my diagnosis a lot and I worried that it would become the focus of conversation the next time I saw them, every time I saw them in the future. But, at some point, I knew that they would need to know, that should my health deteriorate they would need an explanation and that, even if it didn’t, my mother was going crazy trying to keep my “secret”. So I finally ‘fessed up. To the whole giant crew.
It went pretty well. They’ve been very generous in their outpouring of support, sending my lovely emails, and in their donations, helping me dramatically toward my fundraising goal. They’ve been wonderful really. But it’s also a very significant milestone- no going back, no putting that cat back in the bag, no denying the truth of the situation now. I definitely have MS. Of course, I don’t have any different MS than I did yesterday. It’s no more serious, no more or less severe. But it certainly seems more definite. The more people that know, the more those people talk to me about it, the more it reinforces what I already know but don’t always dwell on- that my life is forever changed, irrevocably different and very likely more difficult. That sucks.
It also sucks that every moment I have from this point forward will be viewed in light of the MS. Every smile, every joke, every witty banter, which before people would just accept as part of me and my personality, could now be perceived as heroic, courageous, a really big deal, because I have MS. A diagnosis like this really does change everything, like it or not, and sharing that with others does change your relationship, like it or not. Honestly though, I don’t think my extended family will spend a lot of time dwelling on my health on a day to day basis. I’ll be a story, like so many I’ve heard, that people will tell when someone they knew receives bad medical news- “You know, I have this niece (cousin, sister, friend…) that was diagnosed with MS and she hasn’t let it effect her life- you would never even know!” I wonder if, I hope that, these people who hear the future stories of me find it encouraging and not irritating.
Coming clean with the diagnosis, taking it out of the closet to show off, means that this is forever my story. That I’ve irrevocably changed the way people view me. But it also means that I’ve been as genuine as I can be, that I’ve been as transparent as I can be, and that they really know what’s going on with me. And, of course, if they want to see how I handle it, how I feel about the diagnosis and my every day life, if they want to see whether I’m doing great or just surviving, they can check here, where I’m as honest as I know how to be. I included a link in the letter.