Social Media Groups and Friends
If there is one positive thing that having Alpha 1 (genetic COPD) has done for me, I would say that it is finding my social media groups and friends.
Starting my Alpha 1 journey eleven years ago, I was lost until I found my first Alpha online group. I heard from other Alpha patients how they were dealing with life.
It was scary hearing some of their stories at first but also reassuring hearing of some of the Alphas doing great. We were all learning from each other and guiding each other through our journeys.
Where to find support online
Other online groups and organizations that I have found helpful are online COPD, emphysema, other Alpha 1 groups, lung transplant groups, The COPD Foundation, The Alpha 1 Foundation, and of course, our community here.
I have met so many people over the years, and they feel more like family than friends. I have met many of them in person at Alpha 1 and COPD functions.
It always feels like a big old family reunion when we see each other again every year. I miss seeing everyone, and Covid has put a damper on that. It hasn't been too bad thanks to video chat, zoom, etc.
Some of my best friends now are because of social media. I have lifelong friends who mean the world to me.
The value of having someone to lean on
They truly understand what I am going through. My other family and friends are there, too, and I am thankful, but I don't think they fully understand what a day in life is like for people like us. I know they think they do, but they don't.
One of the first alphas that I met was Sandy. Sandy is the sweetest, kindest person, but she will tell you how it is. No candy coating, just real.
I met her eleven years ago when I reached out for Alpha 1 contacts. Sandy had all the answers to my questions and if she didn't know the answer, she would find it for me.
She is strong and has bounced back many times over the years. She is still grateful for every day that she is here.
We just had a video chat the other night, and I enjoyed every minute. She made me laugh and made me cry.
She has been through a lot in life and keeps on fighting. I love hearing her accent as she speaks. It's very comforting.
I also have many other online friends, but too many to name them all. They all know who they are and how special they are to me. I love each of them even though we haven't met in person.
My all-time favorite online friend is Deb. I have discussed Deb in a previous article that you can read here. Deb and I got diagnosed around the same time but didn’t meet until a bit later.
We found out that we didn't live far from each other and started meeting weekly. We felt like we had known each other forever.
When we got together, we knew what we wanted to do. It was to raise awareness for Alpha 1 and raise funds for Alpha 1 patients.
We started on our journey by becoming support group leaders and creating our own nonprofit, Open Arms for Alpha 1. We have been best friends ever since that first day we met.
Have you met any good friends online? Please share your experiences with us in the comments below.
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