Hey folks, hope you enjoyed part 1 of my interview with COVID-19 long-hauler Karyn Bishof. If you didn’t catch that, you can read it here. Suffice it to say, Karyn’s life has been flipped upside down in the times of COVID-19.
In part 2 of the blog, we discuss a COVID-19 long-hauler Facebook group called Survivor Corps that Karyn is a part of. They’re doing some great stuff providing support for long-haulers and collecting data on the long-hauler experience.
So without further ado, let’s get on with part 2 of my interview with COVID-19 long-hauler Karyn Bishof.
5)You’re part of a group called Survivor Corps that seems to be experiencing an explosion of members. Tell me a little bit about that.
After googling prolonged COVID-19 issues when I realized I wasn’t getting better, I found an article written by the Atlantic. That led me to Facebook where I found survivor corps.
After asking two questions, I was blown away by the responses. Also, the number of people like me suffering for a long time and also experiencing bizarre symptoms not being discussed in the medical community. This led me to start a survey for COVID-19 long-haulers which now has over 1,500 responses and is in the works for publication.
It’s eye opening. My goal was to raise awareness in the medical community on the long-hauler experience and fight for rapid treatment and creation of treatment programs. I believe that each state, at minimum, needs to create 4-5 post COVID-19 care programs similar to what Mount Sinai has done in NY.
The longer people go without treatment for all of their issues, the more long term and serious damage is being done. In medicine, time can be your friend or your enemy. Early treatment is usually responsible for bringing about a better outcome.
I ended up also creating my own page called Covid-19 Data & Support. This was to help people have easier access to my information and projects. Additionally, so they could view updates on the surveys more frequently. I love to share with them because its very educational and very validating to know you are not alone.
6)I think what you’re doing is so important and a fantastic use of social media. I certainly see some trends in your data that are worth exploring. One of the shocking things I’ve noticed in the group is how the manifestations of long-hauler can vary in terms of the symptoms they experience and how they come and go or change over time. What has been your personal experience?
I have experienced about 70 different symptoms. In the beginning, it was pretty consistent. However as the waves have come and gone, I’ve had different groups of symptoms, new symptoms- nothing is safe.
People are still experiencing new things 4 or 5 months out. It’s insane. People are losing their hair, dealing with chest pain, not being able to breath and coughing, having ringing in the ears, dealing with swollen and purple feet, and a temperature while covered in a rash.
That’s just one of my days to highlight how random things come on and how widely they affect the entire body. You’d think that, Oh I’ve been dizzy all day and this helped me so let me prepare this for tomorrow would be beneficial.
But the issue is, most of us will wake up with a whole new set of symptoms tomorrow. It’s mentally exhausting and frustrating because there’s literally nothing we can do to prepare and help ourselves.
7)Going through the posts in the group, one thing I noticed is that people go symptom-free and begin turning the corner, and then all of a sudden get walloped with symptoms again. I assume this comes with a substantial emotional toll?
Look, going through a pandemic is hard emotionally. Losing your job, having your children home from school, it’s all hard emotionally. But when you’re one of the numbers making up the pandemic, it goes a little deeper.
When you’re basically the guinea pig of the pandemic- it’s hard. What’s harder for me is that I cant be around for my son like I would like to be. But more so, not knowing if I ever will be again. No one has answers, solutions or treatment.
We’re literally just sitting here waiting for an answer or waiting for what feels like inevitable death if not treated. I know that’s a little morbid, but there are people months out from COVID-19 still throwing clots and dying, having heart attacks or renal failure.
Day after day there are studies coming out about brain damage suggesting it may also be progressive. It’s terrifying. Then, dealing with the everyday issues which change like an evolving door…I cant even being to explain the level of stress.
Many of us are dealing with anxiety, depression and PTSD. Mental health does play a huge role in this but I want to speak up for myself and thousands of others when I say, anxiety is not causing these symptoms.
These symptoms and lack of help and treatment are causing the anxiety. Doctors need to stop dismissing their patients symptoms as anxiety simply because at this time they don’t have any other answer or understanding of post-COVID-19 life.
8)Looking back to Karyn in February, what would you tell her knowing what you know now?
Honestly, I wouldn’t change anything other than the cliche emphasis on everything can be gone and over tomorrow. I’ve always been a fighter, I always speak up and do the right thing and fight for others much more than myself most of the time.
I can say that most of the others I was around were younger than me by about 8 years. The person I got the virus from was in her 60s. Both she and those younger than me, initially, didn’t really view the virus as a threat, and none of us really ever thought we would be dealing with it personally. I would deeply encourage people to join groups like Survivor Corps or my group and read through peoples stories.
Read through my study. Google long-haulers. Educate yourself on COVID-19 and peoples’ experiences as much as you can. I almost feel like it’s inevitable that the majority of the world is going to get COVID-19.
Arm yourself with knowledge so you can prepare to care for yourself or someone else. Know the warning signs to look for and maybe some coping methods and ways to support yourself and one another.
9)What would you like to tell everyone who may have doubts about the disease and its severity?
I heard a lot of people saying, “Well they said don’t wear masks and now wear marks so they are lying”. I want people to think about something. I’m going to make it very simple. We were once cavemen who learned to make a fire, the key word learned.
We then spread that message which became a survival tactic. Over time, we learned that fire keeps us warm, it can help cook, it can help clear land, seal things, and so on. With masks, we have learned that they are beneficial. And guess what…at this time, they’re also a survival tactic.
And to emphasize, in the beginning, before realizing how easily transmissable this is, we knew our stock piles were depleted or non-existent. We needed to have masks and other PPE for our doctors and nurses saving lives and for our first responders and other essential workers.
It wasn’t about them not being effective. We’ve known masks are effective which is why, even prior to COVID-19, these have always been part of our PPE. It was about making sure those most at risk were protected so they were able to save lives.
This is not a political agenda. This is not a coup to take over the world. It blows my mind there are people out there who think COVID-19 is a hoax. Who think they’re too good to wear a mask to protect themselves or others, And who think that needing a break as a parent is a good enough reason to send your kid to school; exposing them to something that can kill them or create lifelong issues and damage.
I get destroyed on the Mom’s groups, and I don’t care. If I can change a few minds and maybe save a life in the process it’s worth it to me. There are parents saying, “Well, my kids mental health is important”. Well, yes, you’re absolutely right. But guess what? If they die, you wont have to worry about their mental health.
If they bring it home to you and you get sick and die, what’s that do for their mental health? What does it do to them when they bring it home to a sibling or grandparent? Or bring it to school to their teacher?
I’m sorry, but lives should always come before money. You have the rest of your life to recoup your earnings, but could you live the rest of your life without your child, husband, wife, etc because you were an idiot? Because you chose to not listen to science, to be political, or think you’re safe or immune?
If people just did what they were supposed to do, we wouldn’t be where we are now, nor where we’re heading. I’d rather shut the entire world down for 6 months than deal with years of this opening and shutting, wave after wave.
That is going to do much more damage to the economy than doing one shut down and knocking this thing out. Wear your damn mask, wash your hands, and stay away from crowds. Social distance, don’t go to work or anywhere else if you’re feeling ill, and be honest with others if you’re feeling ill.
Follow only vetted scientific sources, and don’t share false information or base your actions on your political beliefs. Be a good human with morals and respect for your fellow person and take a stand to do the right thing and protect others.
Well, there you have it. As you can tell, we have a long way to go before we fully understand COVID-19 and COVID-19 long-haulers. Hopefully, Karyn’s experience will motivate people to read up on the effects of COVID-19 and prevent becoming a COVID-19 long-hauler.
There’s a long way to go before we fully understand COVID-19. Despite what’s on social media, we’re in the first inning of this 9-inning game. In due time, hopefully science can help squash COVID-19, and help provide assistance and a potential cure for every COVID-19 long-hauler.