Shouldn't we be screaming about this?

I know that my posts often have a dose of humor in them, but at the moment, I'm not feeling funny, I'm feeling pissed.

I just finished watching a documentary called In the Family, which was made by Joanna Rudnick, a young woman who found out she carries the BRCA gene, a hereditary mutation that substantially increases the risk of developing breast and ovarian cancer.  She was 27 when she got tested.  By the age of 30, when she began making this film, she was deep in the process of deciding whether or when to have prophylactic surgery to remove her breasts and ovaries and essentially eliminate her risk of getting either of those devastating diseases which had already affected multiple women in her family. 

Although cancer is a decidedly different illness than RA, there are so many aspects of her story that hit home for me.  She is young-essentially my age.  She is single and does not have children yet.  She now faces some pretty serious decisions about her health that will impact her future in lasting ways. She has to go see doctors all the time, and her health is constantly on her mind. The film begins with her wondering how or when you tell someone you've just started dating about your health, something I think about all the time.  She has fears that someone will not want to be with her once they find out.  Ditto.

The film follows her story and includes the stories of other families that are dealing with genetic testing and, in some cases, cancer.  To watch some of the incredibly young women in the film contemplate being tested and, for some of them, find out they are positive, to know that their lives are forever changed, is intensely difficult and heartbreaking. Though due to different circumstances, I know what that feels like.

The film was lent to me by a close friend of mine who is in the same position as Joanna.  She is positive for the breast cancer gene, in her mid-thirties and single, and she is planning to have both surgeries within the next few years.  Watching this film and thinking about her and about me, I started to feel a well of anger open up deep inside.  I have four close friends, all of whom are in their late twenties/early thirties, who are dealing with serious and complex health issues.  In addition to my friend who is positive for the BRCA gene, another has colitis, one has ankylosing spondylitis, and another was recently diagnosed with MS (or MFS, multiple f****** sclerosis, as she calls it).  Is it just me, or does this beg the question: what the hell is going on here?

Since starting this blog, a number of women have responded to tell me that they are in the same position I am- young, single and struggling with this crappy disease. Has it always been this way?  Are we just more aware of others who are going through this now because of advancements like the internet, or are we really getting sicker at a younger age? At the risk of sounding like Carrie Bradshaw, I can't help but wonder why so many young people are getting so sick? 

When the movie ended, I started crying and all I could think was, I don't want to be sick. I just don't. want. to be. sick. I don't want my friends to be sick.  I don't want to have to think about my health all the time and wonder what's in store for me. I don't want to worry that my sore throat is going to turn into a bad infection my body can't fight.  I don't want to think about my increased risk of heart disease or lung cancer. I don't want to think about what happens when the medicine stops working, or what else I'll end up developing as a result of the medicine working. I don't want to worry that it may be complicated for me to get pregnant, or what I'll do if I have a flare afterwards and can't hold my baby without pain. I don't want to feel like a giant liability to anyone that might choose to spend a significant portion of their life with me, let alone forever. I don't want to have to think about any of these issues at this point in my life. I don't want to think about it at all.

Unfortunately, I don't have a choice about any of that, which I have to accept, but I do get a choice in what I do about it. Feeling angry and looking at the bigger picture makes me want to take action.  In a very small way, I've started by beginning this blog and beginning to write about it, but much more can be done.  Why aren't we all screaming about this and demanding more funding for research?  Why aren't we asking louder questions about the causes that are behind so many of these autoimmune diseases? Why are so many of these diseases barely understood by most people when they affect so many? 

I don't have the answer, but I think the only way I can stand to deal with all of this is to figure out some way to do something more about it. Maybe it's time to start some kind of network for young people dealing with serious health crises.  

I'd like to invite anyone with any ideas, or anyone who just wants to pipe up to either leave a comment or send me an email. The louder we are, the better.

Comments

[nick]

hi, im not single yet but i still relate, please check out my new blog..........i though about montel williams while reading this post

[Mrs. Mordecai]

Hi, I'm 26, not single, but with a two-year-old to chase. I had rheumatoid arthritis at the age of three and didn't have to deal with it for over 20 years until it recently came back again.

Things have gotten much better. When I was three, the best medication I had access to was aspirin . . . 18 baby aspirin a day. It's so amazing that now there are much better painkillers available, and drugs that help with immune system problems, and not just pain.

I agree that it seems that a lot of people are sick, and that it really stinks. I hope research continues. But it has come a long way.

[Erin]

Ok so I too am single, I'm 27 and was the most active person you may have ever met. I have now changed my career, moved AWAY from the ocean and am in fact lying in bed right now in too much pain to tackle my damn to do list that is lurking beside me. I just came across your website and I feel as if you may have been peeking into my own personal journal when writing your blogs. It's comforting yet sad that there are other people that have to fear the same things...I.e. Complications with having children. I fear that moment every day. I'm not having one anytime soon but I have heard horrible stories and it saddens me to think that's what the future may hold. Anyhow. keep blogging!!

Erin

[Sara]

Mrs. Mordecai- It's true, medicine has come a long way. thank god that it has, and hopefully will continue to.

Erin- urg, to do lists are the worst now!!! They are my nemesis. I used to be able to get so much more done, and now, I just can't and it's so hard to give myself that break mentally. As for the other things, when I catch myself getting really worked up, I just remind myself that I'm not there yet, and that I can't predict the future. I'm glad you found the blog-it helps me to know who else is out there, too!