A diagnosis of a BRCA gene mutation can come with many questions, difficult choices, and the need to connect with someone like you. Christen Williams, who you may know as BRCAChatter on YouTube, talks to us about the friends she made and support she found in the wonderful community of BRCA carriers following her own diagnosis.
Hey, do you want to be part of my gang? It’s pretty elite, with only 1/400 people being eligible. It’s the BRCA Mutation gang, and members have an increased risk of hereditary cancer. You will probably say no, but I am here to reassure you that it’s the most supportive and welcoming gang I have ever known.
Finding out you have a BRCA gene mutation (or any other hereditary cancer gene mutation) can be completely overwhelming and lonely. BRCA mutations are rare, therefore friends often don’t know what to say, or how to support you. That’s why the BRCA community came together like fireflies drawn to a flame.
Knowing you have a predisposition to cancer is scary, with questions on top of questions forming in your brain. Your questions are answered by professionals and then you are given choices. Very difficult choices. How do you decide whether to have regular cancer screenings or preventative surgery? My biggest advice to you is: do your research. By that, I don’t mean reading medical journals (although, don’t let me stop you), I mean talking to real humans, who have been there and done that.
Living as a BRCA carrier can be hard, there are ups and downs. But when you have those downs the gang is there to pick you up - unfalteringly.Christen Williams
It took me three years to connect with others and I wish I had done it sooner. Now I have new friends across the globe who get me, my journey, my pain, my trauma. To have someone who's been through it saying “It’s not that bad” can completely change your mind set. I am that person for others, now. Living as a BRCA carrier can be hard, there are ups and downs. But when you have those downs the gang is there to pick you up - unfalteringly.
I often tell people that having a BRCA mutation was worth it, just for the people I have met. You will have a new perspective on life. You will have your own mortality questioned, and suddenly have an insatiable urge to live. You will then be surrounded by others who have the same inspirational passion. You cannot help but feel empowered by those around you.
So, where did I find this incredible network? Mainly through social media: Instagram, Facebook and Twitter. The downfall? You cannot censor what you might see. People use social media as an outlet for all their feelings, good and bad. Some days you might read something that frightens you. My advice is to limit the amount of time you spend on it, so it doesn’t become all consuming.
Why is all this so important? You cannot do it alone, and do not need to. Reach out and start connecting. Have I convinced you to be part of the BRCA gang yet?
28th September-5th October is Hereditary Cancer Awareness Week. A week dedicated to raising awareness of the genetic conditions that increase our risk of certain cancers, and empowering the families affected by them. Click here to find out more.