The Power of Technology
Can't live with it, can’t live without it.
When you think of technological advances most people think of the many blessings that help us thrive more now than ever such as machines and new medications. Some think of the negatives of technology such as the internet crimes now making it easier than ever to hurt people a world away. The separation in relationships due to technology. Also, the ease of stealing an identity or pretending to be someone you are not.
I think of technology advancements though in a positive light, both due to medical advancements and communication advancements. The power that same internet, that can cause harm, can also bring us as a community a connection. Of course, there are risks, but as people who deal daily with a body that attacks us, sometimes we just have to cling to the positives we can find.
A lonely disease
When I was growing up with CF I never met another person with CF. Then as a young adult I met one girl, pregnant the same time as me, but naturally we had to keep our distance. It’s hard to open up with masks and at least six feet between us. (We we’re doing that before it was cool!) I never really got to connect to her. I never knew anyone who understood my battles on a personal level.
Until the internet became a place to meet others like me.
As technology booms, and social media takes off, and places like Cystic-Fibrosis.com are created - it gives people like us a safe place to belong to. Here my words come alive and are met with people who understand. Really understand.
I’ve been blessed to have a wonderful support system. I have two parents, a brother, and wonderful friends. Both my kids and their dad provide me unparalleled support. They have all had to watch me struggle and I know that is its own kind of difficult.
A difficult road
I don’t know how to put into words though what it feels like some days. I don’t know that I could ever adequately explain what battling cystic fibrosis really feels like. No-one close to me has ever struggled to gain weight while constantly nauseous. Or had an IV fail five times. They’ve never known how worn out and tired your body can feel after years of relentless coughing. They don’t have a constant fear of one cold killing you. They don’t know the guilt that sometimes comes with having an illness that requires so much. That doesn’t make anyone less supportive, but some days it still makes me feel alone.
You’re never alone
Then I pop online and come across this site or other support groups and I see others like me that I want to reach out to and say- “hey, I’m here… and I get it.”
So many people focus on the negative aspects of social media and the World Wide Web, but for those living with a disease that can be very lonely at times - I think it’s amazing. There are full communities available where we can share our stories, have personal questions answered, and just feel a sense of belonging.
We can have support in our wins and support in our losses. We can have a place to talk about the less pretty aspects of living with CF. There’s a place we can share our fear of lung transplants, infections, and leaving our loved ones. We can talk about our daily routines that seem never ending and the struggle to keep it all together. We can share the triumphs that may seem small to others, but to us - it’s huge! We can just talk about the beautiful and ugly aspects.
As a health advocate for cystic-fibrosis.com and as a cystic fibrosis warrior it’s so evident to me how much social media support groups can help. Due to health risks we have to keep distance so often, but the internet can really be a place to be welcomed and feel seen by people who understand your battles. I appreciate having this group and others like it. We always have others who understand the battle. Feel free to reach out to me if you ever need a virtual friend. You’re never alone!
We can come together, with no risk, and just be… and that, my friends, is amazing.
How has CF impacted your decision to become a parent?