Last year when I got diagnosed with the I felt so completely alone. Utterly alone. No one understood. No one got it. No one could or would really understand what it was like to have your head cut open…let alone 2 different times.
But then I found #btsm on Twitter (and #braintumorthursday). Within this community of survivors, caregivers, etc. there has been a feeling of camaraderie that really gives me peace. That really helps me when the days get bad. I know of a place where I can turn, reach out, vent, whatever the case may be – and people “get it”. They really do. Finding this community has done wonders for my soul. I’m very thankful.
Through Twitter there’s another hashtag (#raredisease) and I tweet there often about Cowden’s Syndrome and I include pertinent hashtags that I think might get my tweet read by others who “get it” too. I’m happy to say that I’ve connected with another person who has Cowden’s Syndrome. Now, in and of itself that news doesn’t make me happy – but what helps me is that this “rare disease” isn’t so rare…or, rather…the Internet really is a small place. And that Twitter and other forms of Social Media can be used for amazing purposes. This person has chosen to share her story of CS and this in turn helps me. Helps me SO much.
I thought I was the lone survivor in this world of Cowden’s Syndrome. I thought I was the lone person walking this path. I am so thankful to connect with others who are strong examples of courage and faith. I know I can lean on them when my road gets bumpy.
Please visit her blog here.