My Life with Long-haul - Intro
Am I really doing this? Am I really gonna finally sit down and start writing about my life with long-haul Covid? How fucking daunting.
I have been dealing with this in some form or another since February 2020. I have been unemployed and living with my parents due to it since November 2021. I have been claiming I will write about it since probably Spring of 2022.
I have been putting off writing about it. For sooooooo many reasons:
1- I am still going through it. I usually don’t start writing about something until I have some sort of ending for it. There is still no end in sight with this. How do I write about it?
2- I don’t feel well most of the time. That makes it hard to write anything at all ever. So, when I do have the energy to write, I am trying to write things that make me happy or that I think I can sell.
3- I spend most of my time not only feeling like crap, but dealing with this illness in some way or another. Whether that be a slew of doctors’ appointments, navigating the nightmares of applying for disability and then appealing the denial, traveling to the Covid clinic that is 2 hours away, fighting to get public aid to cover the treatments I need, reading articles my dad gives me about new research on the illness, or just answering a ton of questions from people regularly that have something to do with my illness. Managing this illness has become my full-time job, and when I am not managing it, I don’t want to think about it. I am this whole person with all these other things about me besides this illness. I am tired of it taking over my whole life. So, when I get a break from it, I don’t want to think about it to write about it.
4- There are some people and situations that are a part of this story that are really shitty. Not only is it hard to relive them, but I am struggling with sharing these parts of the story. I know I don’t have to share anything I don’t want to share. But, I want to do this story justice. I am the kind of person that doesn’t want to shy away from the hard truths, and I want to share all the things that have been part of this. I worry about people reading this that were somehow involved in these shitty moments. Of course I won’t share their identities. But, I worry about the potential conflicts it could start. I don’t want to deal with that. I don’t have the energy for it. At the same time, I owe myself a brutally honest account of this whole situation that I can have for myself. Something that exists that tells my truths. I also want people to know all of the dirty details that make up this story. I am doing a disservice to people if I don’t share it, because then you don’t see the full picture. I am ready for people to see the full picture. I think…
5- I am opening myself up to so much crap when I do this. Will the people at the social security office find this and use something in it against me to try to deny me for disability, which I have every right to receiving? Will someone who was involved in this story as one of my villains read this and recognize themself being described in it and come after me? Will even more people start messaging me to try to diagnose me with something else, in essence gaslighting everything I have been through? It seems like the more I share, the more I open myself up to BS. But the less I share, the less people understand what is going on.
6 - One of the other reasons is - will this open me up to even more people messaging me to ask me a lot of questions about this illness, ask me to help their friend who has this illness, or they want to commiserate about it? I get so much of that already. And while I very much want to help these people and be there for everyone, I don’t even have the energy to help myself. I just can’t answer any more messages about this. I feel like I can’t win. If I never talk about this condition, then people assume I am fine and healthy and they expect me to be able to do all these things I can’t do. If I talk about it too much, I am trying to get attention and complaining too much - plus, I honestly don’t like talking about it that much. If I talk about it sometimes, but not all the time, then I have opened myself up to so many people reaching out to me and asking me to deplete my precious little energy by answering their questions, giving advice to their friends about it, giving them even more details than I have already shared, etc. The hardest part of that for me is that I genuinely want to help people, and it kills me that I can’t. I just don’t have the energy to write responses to all of this all the time.
With that being said, that is part of why I am writing this. I can just send the link to my blog, and say “here is everything I know.” The work has already been done. I only have to do it once. I can copy and paste a link. No energy needed on my part. But then, you have to read the really long, full, ugly, frustrating truth. You may not want to read this much. But this is what it is. The energy it takes to read it all is the energy it takes me every time to answer all the questions. And it is energy I don’t have to spare.
I don’t mean for all of that to sound harsh. I really don’t. I do really love most of the people who are coming to me. And it breaks my heart to always have to tell people that I don’t have to space to answer their messages and write responses to what they are asking. So, I am hoping by writing this and sharing it, that I can use my blog as my response.
You may have noticed this piece has “Intro” in the title. That is because this is a story that has been going on for 3.5 years (and will continue to go on for I don’t know how long), and it will have many parts/posts. I intend to cover every aspect of this whole situation. I can’t write all of that in one sitting, or one day, or in one post, or in one anything. I don’t know how many parts there will be, as this is ongoing. That will also make the posts more digestible for you, dear readers. I don’t plan to only write about just this topic in the coming weeks and months. I will still write about other things. And I will post those other things intermittently in between these multiple parts of this story. That will help break it up for all of us. LOL
I hope that putting it out there will help people in some way. It could help people understand what long-haulers are going through. It will give more visibility to this very real issue in our world. Maybe it could help other long-haulers feel seen. I hope it can answer any questions anyone has. Maybe someone who can actually do something to help will see this and it will give them information to help people who have it. Maybe people will think differently about what their expectations of long-haulers are. If nothing else, it is a story. Like you are reading someone’s memoir. And someday, I can look back on it all. Hopefully, when that day comes, I will be cured and living a different life than I am right now. But, honestly, I don’t know with any certainty how any of this will turn out.
Ok, I am going to do this chronologically. Instead of one post about doctors, and one post about finances, and one post about emotions, and one about disability, and one about insurance, etc… I am just going to start from the beginning, and move chronologically through all of it. Part 1 coming in the next post. I will release both of these at the same time. But, I don’t know when Part 2 and the rest will happen. Stay tuned…..