How has long COVID impacted your ability to work? Pam shares her story.

Speaker: Pamela Bishop

Pamela Bishop: Hi, I'm Pam Bishop. And today is the three year anniversary of the positive COVID test that, um resulted in long COVID for me and derailed my whole life basically. Um, prior to the day, three years ago, I was a research professor at a large university, um, where I was the director of my own research center. Just sort of like running a small business on your own. Um, you do the accounting and the hiring and all of the business development, um, grant writing, project management. Um, so it was a lot and I enjoyed it. Um, I've worked since I was 14 and put myself through three degrees in college, working full time for all three of them. Um, and for my doctoral degree, I had my daughter during the first semester and my son during no, my son during the first semester and my daughter during my comprehensive exams. So, um, no stranger to working hard. Um, I felt like I always had a good work ethic. Um, and this is my service dog who I have now. He's worried about me because I'm not feeling well today. Um, I hung on to my career. Um, January to May of 2021 was a bit easier for me, even though I was feeling increasingly, um, sicker. I was working from home so, um, I could hide it very well. I was taking meetings and then going to bed and getting up and working for maybe a half an hour and then going back to bed again. Um, and it was very hard for me to, um, admit that I was losing my ability um to manage the career that I have worked decades for. Um And I'll never forget uh getting my team together on a Zoom call and admitting to them that I had been much sicker than I had been letting anyone know. Um I, of course, like probably a lot of other people with Long COVID um thought that it was going to get better, thought it was just long uh recovery from the COVID infection. And then I heard about Long COVID in March of 2021 and I started thinking that possibly this wasn't recovery even that some real damage had been done. Um And so I was lucky I had bought into something called a sick bank at the university. Um And that's where you donate sick hours. And then if you happen to become ill, you can apply for those hours beyond your sick time that you've had accumulated. And because I was an interdisciplinary uh researcher on campus, I'd worked with a lot of um different departments. And when the word circulated that I was really sick, people kept donating their time and that, that went on, um, to the end of 2021. So I was technically still employed, although I wasn't working, I was on sick leave. Um, and at that point, I, I realized that, you know, this is not getting better and I'm probably not going to get better. Um, and so I, um, filled out the paperwork for retirement at age 45. Um fortunately I'd had 15 years with the university, so I was eligible for retirement, early disability retirement, um which allowed me to keep our health insurance. Um because I'm the one in our household who um carries our health insurance. So, and it's now twice as much, but I was able to at least keep it. Um I was also fortunate that I bought into private long term disability insurance. Um, but I didn't know if I would qualify. I've never was probably a six month period where I was waiting to hear and collecting all of my doctor's notes and um just all of the information about this, you know, new to the world, illness that no one understood. Um And I just didn't know, you know what was going to happen. It was very scary. Um, my husband and I are both equal contributors to our household income. Um So we're fortunate that we have a second income, but um it's a pretty big blow to lose half more than half actually of, of our income. So, um, it was finally approved, um, which I was actually very surprised about. Um, and since that time, um, every three months they threaten to pull it. Um I'm actually at a point right now where I have to again prove that I uh have a disability. Um, and it's a disability that there are no bio biomarkers for. I have been diagnosed with postural orthostatic tachycardia syndrome, which actually does have some clinical tests. Um I've done the tilt table test and passing out and um met the criteria for that. I also have myalgic encephalomyelitis. Now, um chronic fatigue and mast cell activation syndrome. So they're all very difficult diagnoses to um proof that you have outside of pots. Um You know, and besides those three diagnoses, there are lots of other symptoms that there's really no explanation for. And um across all of those diagnoses, I I'm just disabled. I spend the majority of my time in bed now. Um I do have Children so I revolve my schedule around resting to make it to what's really important. So they both play a lot of sports and are involved in a lot of extracurricular activities and I can't make it to most of that anymore. Um So I pick certain things and I lie in bed and I wait and hope that I'm going to have enough energy to go um participate in life with them. Um So I'm still waiting on uh hearing, you know, this next round of decisions for my disability claim. I had to apply for social security disability insurance as a term of my private insurance award. Um I have been denied for that twice. I'm waiting for a hearing date. Um and there is also a copious amount of paperwork that comes along with that as well. Um It's very hard for me to organize myself and, um, manage all of the paperwork. I've always been the one in our household who, who has managed all of our paperwork and our finances and all of the children's paperwork and doctors appointments. Um, and now that's just incredibly difficult for me to do. Um, I miss work. It was a huge part of my identity. Um, I worked hard for my career and I enjoyed it and losing that career was one of the biggest blows of this whole illness. And I would like to one day go back, but I don't know that it's possible. I don't know how much damage is permanent. I have a lot of cognitive issues now, memory, um, word finding, um, just slow processing speed, forgetting what I'm doing, difficulty with executive functioning. Um, besides that, I just have massive debilitating chronic fatigue, a lot of pain, a lot of headaches and migraines and joint pain and nausea. Um, chest pain, I mean, it's just never ending. So that's my story. So far. Thank you for letting me have the opportunity to tell it and thank you to pandemic patients for caring.

Pamela Bishop: Long COVID has impacted my ability to work greatly. Um, uh, so much so that I am unable to work at all anymore. Um, certainly can't work as a professor, which was my career before I got sick. Um, I can't be upright for more than a few hours at a time. Um, cognitive work is actually just as exhausting as physical work now. So if I have a phone call or a zoom call or just have to work on paperwork for, um, my kids or for my disability application, um, all that is severely impacted by my illness. Um, everything I do has a cost and, uh, I can't even imagine a career and I have really thought about what could I possibly do now, uh, with my health being so poor. Um, and, you know, even if I could find a way to work for myself, I'm not sure that I would be reliable enough at this point because I don't know when I wake up in the morning, if I'm going to have a day that I'm stuck in bed all day, or if I will have a few hours that I'm going to be able to be productive. Um, but either way I know that I won't be out of bed for a whole day or even, probably half of the day now.