When I was first diagnosed with COPD (I have asthma/COPD overlap) in my mid 20s I was devastated and confused. I had never smoked a day in my life yet I was given this diagnosis. Being a respiratory therapist, I already knew a lot about COPD– from the clinical side, but not the personal one. I felt alone. None of my friends or family had COPD and while most were supportive, I decided to just hide it and not tell anyone.
This ate me up inside.
I was so worried about what people would think of me or judge me. I spent many years keeping it under wraps and eventually it became too much to deal with on my own. It was at this time I decided to seek out others who had COPD as well in the hopes of finding some support. It was then that I realized just how much support I had been missing for so long.
We are fortunate to live in a digital age where connecting with people both online and in person can be pretty pretty easy.
If you have a Facebook profile (or are willing to create one) check out the plethora of Facebook pages and groups for support. I’ve “met” so many wonderful people in different groups and they have helped me tremendously navigate this disease.
Online COPD specific communities
In addition to Facebook there are many different websites with message boards full of helpful information. Often times, articles are shared and discussed in online communities much like they are in a Facebook group.
Local support groups
Check out if your city or town has any in-person support groups. A great place to start is to ask your doctor if he/she knows of any or even your local hospital. The American Lung association also has lists of resources for COPD patients online. While online interaction is great and often times more convenient, there is something special about face to face meetings.
Word of mouth
As you share your disease with those around you, you might find that those you are sharing with either have COPD themselves or know someone who does. Making those connections is another great way to get to know others and to be able to share experiences.
Finding fellow people with COPD (in my opinion) is vital to our emotional well being when we are living with this diagnosis.
We definitely don’t need to feel alone.
I’ll admit often times it’s easier to just hide and suffer in silence but this is incredibly detrimental to both our emotional and physical well being. I have a few COPD buddies that I have become pretty close with over the years. We can share the good, bad and ugly with each other without any judgment. If I’m having a bad lung day I know I can lean on them for support. We share things we hear about or new advancements in the treatment of COPD with each other and discuss our feelings about them. We know that we can count on each other 24/7. I encourage each and every one of you find a few COPD buddies and get connected. It will be so worth it.