Why is long COVID patient advocacy important to you? Pam tells us.

December 06, 2023

Video Transcript

Speaker: Pamela Bishop

Why is long COVID patient advocacy important to you?

Pamela Bishop: Hi, I'm Pam Bishop and I have had long COVID for three years. Um, I got into patient advocacy in the first year of my illness. Um, early on when I realized that most people had never heard of Long COVID. Um, and it seemed to be quite a struggle even at the doctor's offices to, um, get any sort of appropriate health care. So, um, my first step as an advocate was actually to contact, um, all of our local news stations and tell them what was happening and see if they had any interest and they did. Um, and so I went out on a limb and did an interview, um, and that was, uh, difficult because I knew that this was our local station and I was basically admitting to, um, everyone in my town that I had a very disabling illness and that it was the result of a COVID infection. Um, we didn't know a whole lot about it then, even less than we know now. But, um, I just told my story and, um, you know, there were strange responses, um, help people with ideas about, you know, different therapies and drugs and things like that. There were um people who didn't believe that this was a real illness, um who found me through different venues. Um But overwhelmingly, the response was positive, I got a lot of private messages and social media from people who saw the interview and said, oh my gosh, I'm going through this same thing and I felt so alone and thank you for just telling your story. And uh you know, making me feel like I'm not crazy, like I'm not alone, you know, other people are going through this. Um And it was those people who reached out that really bolstered my um dedication to um creating awareness around long COVID and advocating for research in long COVID. Um And since that time, I've, I've done several national level interviews um and worked with um some researchers doing advocacy work. Um Yeah, and it's, you know, it's a small drop in the bucket. I don't think that what I'm doing alone is going to change anything, but I do think that our voices collectively um can make a huge difference in long COVID awareness and um the potential for research. Um And so I do think it's incredibly important. It's, it's a hard thing to open your life up in that way and it's a very personal, a very personal decision um because there is a lot of support, but there are also people who um are negative about any sort of advocacy work that's done. Um but I do think it's important and I do plan to continue to do it as long as I'm able.

Produced with Vocal Video