As someone who had just discovered her lungs are affected by alpha-1 antitrypsin deficiency (AATD), I felt lonely, being the only one I knew who was so affected by this rare disease. I found support groups encouraged me to not be afraid to ask my doctor the questions I needed to ask and when to calm myself.
People had suggested I look for a physical AATD group several times, and living in a less populated area, I never did find access to one and I still haven’t found one. I decided to try Facebook, a perhaps risky thing for children to try on their own, but a safe source for most adults to connect. Once I found the right one, this became my core group for AATD support and empathy.
It was encouraging that I could relate to many people who felt the same feelings or had been through the same experiences that I had. I realized I wasn’t the only person who felt isolated and scared about what life might look like in the wake of COVID or why I now could not do things that were basic to me a decade ago. Once again, I felt human, and eventually, I even felt strong.
When it came time for me to get infusions, I had so many questions though I knew the doctor couldn’t take calls from me every day and I for sure couldn’t afford that many appointments. I found many people in the group who showed me that infusions weren’t so scary.
There are some negative aspects of a support group, like letting it become too big a part of one’s life. By this, I mean having such an active group can feel like the condition is part of my identity. Many people with chronic illness face this struggle, but it is always their choice to decide how to respond.
There is a lot to be said for personal responsibility. There are always going to be people who act as naysayers or who inadvertently say misleading things. There are a lot of things support groups are not. They are not generally good sources of information unless there is a strong administrator monitoring for false information. However, they can gently point a person in the AATD world in the right direction and allow others to follow suit.
Read more about therapies for AATD
A support group like this can be a scary place because of some of the strong opinions expressed. For example, people will often (and I mean often) speculate about what symptoms can be attributed to AATD and what might be a symptom of a different problem. For someone new to the world of AATD, listening to such things can heighten anxiety, even though they have a responsibility to rely on facts.
Because I have at least one respiratory disease (they aren’t sure what is going on in my lungs), the anxiety in my life is elevated most of the time. This is also because of what happens to me when I do normal activities, like going upstairs, sleeping, and cleaning.
Don’t even get me started about putting on my shoes!
However, every time I hit a milestone, like getting approved for Medicaid or infusions, I share the joy with others. It’s so nice to get affirmed for these small victories. Those outside the group may not understand, but these things can offer a new world to those like me.
The kindness of people who have gone before me and offered a listening ear gave me a gift I cannot repay. The beautiful thing is they don’t expect me to do anything but pay it forward. Some days our community feels like we’re a family (that comes in all shapes, sizes, and languages).
Some people have become known as peer leaders in the group in a positive way. Like others, they post regular pictures of themselves and their families, doing things “Alphas” (what we call ourselves) do. This includes getting an infusion successfully or going to see their doctor for their regular pulmonary function test (PFT). They encourage others in the group to keep walking along the road they are currently on with valor and hope.