My Life With Long-Haul - The Do's and The Don'ts - A PSA
Link to previous post in the series - Part 2
Ok, I wrote this a couple of weeks ago. I sat on it. I edited it a lot. I asked a fellow chronically-ill writer to read it and let me know if she agreed with the points being made (she did). So, I am finally gonna hit publish on this puppy, and hope I struck the right mix of speaking up about some important issues for chronically ill people, and not being too surly.
We are now taking a break from the regularly scheduled programming of me telling my chronological long-haul story, to make a necessary PSA to help preserve my mental health, and to hopefully help people understand the unique boundaries people with chronic illnesses have. Anyone who is reading this that has a chronic illness, I give you my full permission to use this piece when you run into these situations. I also give you my permission to tweak it to your liking/illness. (Assuming you respond to people at all. Not responding is such a valid option. I keep trying that, but some people keep pushing anyways).
This one is gonna be a little spicy. I can’t imagine anyone reading this has committed any of these faux-pas, because the people that are committing them are the ones that don’t read anything I am actually writing about this. However, there are a handful of very lovely and well-meaning people that do truly care, that also have maybe unknowingly crossed a boundary. This post is meant to be a polite message for the lovely and well-meaning ones, and a hard line for the people that are just straight up being rude and invasive. I will just copy and paste this post link into any rude messages I receive from here on out, so that I don’t have to expend any more energy on this. (Again, I have tried not responding at all, and that doesn’t seem to be doing the trick.)
I have, in several of my social media posts, addressed some of the ideas below. However, I guess I am not clear enough, because I am still dealing with this. So, this time around, I am making this request a lot more direct, and I know it probably sounds rude, but it has become necessary. (Apologies to the readers who don’t do any of this. If you start reading this and it just feels like a lecture you don’t wanna hear, it’s ok if you wanna stop reading. Otherwise, if you like it when I get spicy, then enjoy! LOL)
Ok, here goes. If you don’t have a chronic illness please:
1 - Do Not treat us like your own personal Covid and/or long-haul Google. That’s what actual Google is for. I am too tired to answer questions that people could just as easily type into the search engine. I post what I post so that I can help people. It takes a lot of energy for me to do so. I could just completely stop talking about it, and be of no help to anyone. And that is the point I am getting to, cause it sure would make my life a lot easier. But, I do it to bring awareness and support to this illness. I do it to help people feel less alone. I do it to try to help people in general. I like helping people. I do not like receiving a ton of messages with people asking me a ton of questions that I have already answered (or are easy to find). I don’t have the energy to answer every question people have about Covid and long-haul. I sometimes can’t believe the level of invasiveness and rudeness I get of people just messaging me without even asking me how I am feeling, if I am up for answering a question, or if there is anything they can do to help. They just straight up type a question to me the way you would in a Google search bar without even bothering to say a simple “hello”. This is not ok. I have a serious chronic illness in which I spend an exorbitant amount of time at doctors and resting, and not being able to do much of anything I actually want to do. Please don’t ask me to use my limited energy to answer questions. And if I don’t respond, there is a reason why. Don’t keep messaging me about it.
2 - Do Not ask us incredibly personal and invasive questions. Someone sharing information about their illness publicly to try to help people does not mean that they shouldn’t be respected and be able to have some boundaries and privacy. Again, Google it. Especially, if you aren’t all that close with each other. My very best friends are allowed to ask me super personal questions. And they always preface it as such, and ask if it is ok. Someone who I barely see or talk to, shouldn’t just message me out of the blue with some deeply intrusive personal question. I share what I want to share. Full stop. It’s like when I used to do stand-up comedy and I would make a joke onstage about sex or something, and then some creepy stranger from the audience would come up to me after the show and ask me really nosy and inappropriate questions about the joke. That’s one of the reasons I quit stand-up. But, unfortunately, I can’t quit long-haul.
3 - Do feel free to offer us help with something if we ask for it. Don’t feel obligated. But, if you can and you want to, and they have asked, feel free to offer them that help. They will appreciate it. For instance, when I had to make a quick getaway out of Chicago and back to live with my parents because my illness had gotten so bad, I posted and asked if anyone would be willing to bring me boxes and/or help me pack. And some of the most wonderful and nice and lovely friends came through for me and I love them so much. Another thing that happened is I ended up needing more money than what I had in order to move. I put all my shame and pride aside and mentioned that if anyone could spare a few bucks, any little bit could help towards a $3k moving truck. And people came through like gangbusters and gave me every penny. It was one of the most lovely and humbling moments of my life.
4 - Do Not offer to help us if it is an empty offer and you actually aren’t planning to help. I can’t tell you how many people have said “let me know if you need anything or if I can help in any way” and when I ask them, its crickets. Or they will offer specific help for something and I say, “ok, yeah, that would be great” and then I never hear back. Just don’t say anything at all. Offering to help someone, and the ill person swallowing their pride and being vulnerable and admitting that they do need help, only for the offerer to go back on that offer or just not answer them - really sucks. It makes everything worse. Not only have they not helped the situation, but they have hurt it.
5 - Do Not offer unsolicited advice. I have more than enough cooks in this long-haul kitchen. I appreciate that people want to help, but I don’t have the energy to explain to each person that I have already tried that thing, or my doctor says that thing won’t work, or whatever. If you have some information that you really believe could help, and I haven’t asked for it, please preface it with - “I may know something that could be helpful, do you want to hear it?” Then please don’t be offended if I don’t answer, or say “no”. It isn’t personal. I am overwhelmed, and I am tired, and I have a few really good medical professionals looking after me. Sometimes I will say “yes” and want it; and sometimes I just won’t be able to handle it and will have to decline. Pioneering a brand new illness is exhausting, and there are a million theories out there about this unknown thing. And there are a lot of unreliable sources out there who don’t know what they are talking about. I just don’t have the energy to be inundated with all the theories all the time. I love you so much for wanting to help. I am lucky you care. But there is just too much coming at me and I can’t keep up with it all.
6 - Do feel comfortable just leaving us be and treating us like a normal person. People don’t have to feel compelled to send us lots of stuff. We know you care and appreciate it. But we are tired, and get overwhelmed with life. I usually get the same articles/videos/posts from multiple people. I don’t have the energy for lots and lots of memes and reels and articles and content. We know people are just trying to help, and we appreciate it, but it’s ok just to step back a little and not try to over-index. I am not saying I don’t want people to talk to me ever, or to just never send me anything. Just send me what you normally would have sent me if I didn’t have this illness, and understand that it is hard to keep up with too much of it.
7 - Do Not ask for our help. This kind of goes along with #1, but in a much more polite way than I framed #1. Some really wonderful, kind, and well-meaning people have reached out asking me to answer long-haul questions, give advice, and whatnot. I don’t want you to feel bad if you have done this. But, I also don’t have the energy to do this. I barely have the energy to take care of it myself. What I post on this blog and on my social media is all I have to offer. It’s the best I can do. I can’t expend the energy it takes to answer so many different individual messages and questions. Please refer to my posts and/or the internet. I can’t do any more than I am already doing. I wish I could, but I can’t.
8 - Do Not diagnose the chronically ill person yourself. The chronically ill people are working on it with medical professionals. I have received messages out of nowhere, from people I barely talk to, who are far from medical professionals, telling me that maybe I have anxiety instead of long-haul Covid. I can’t even get into all the ways that those messages are so laughable for so many reasons. These illnesses are so complicated and hard to deal with. We don’t need people gaslighting us and telling us what we have isn’t real and/or is something else.
9 - Do Not assume when we go out and do something that we are completely better/normal again or we are faking it. We spent days resting before and after to accommodate that one thing we did. Or we lucked out and had a good day for a change. Please don’t begrudge us that. Please allow us to have one good day every week or month or whatever. That’s how these illnesses work. We aren’t 100% bedridden. We learn how to pace ourselves so we can occasionally have enough energy to do things. We have good days or a few good hours here and there.
10- Do respect our time and energy - It is really super duper hard for us to make plans to do something. We spend days beforehand getting rested up so we can meet up with you. We turn other things down because our plans with you is the one thing we have agreed to be able to do that week. We started getting ready earlier than normal to accommodate how slow we move. So please be thoughtful of that, and don’t bail on us at the last minute (unless it is a super legit reason). It has so much more of an impact than you realize when you do it to a chronically ill person. We have carefully plotted out our whole week to be able to see you. Please don’t flake.
11 - Do think about what the person with the chronic illness is actually going through. I think if most people took a moment to truly put themselves in the shoes of someone with chronic illness, they would not behave in a lot of the above mentioned ways. Take a moment and think about a time when you felt so awful that you couldn’t get out of bed and needed someone to do almost everything for you. Now imagine feeling that way the majority of the time. Then imagine people wouldn’t leave you alone, and you were just getting a huge influx of questions, comments, unsolicited advice, weird messages, etc. Imagine that people were wanting answers from you regularly. Or that they weren’t respecting your time and energy. Imagine that people were treating you like an exhibit at a museum. Or a science experiment and you were just being poked and prodded. Would you want to be bothered all the time? Would you want people constantly crossing boundaries? No. You wouldn’t want to be bothered at all. You would want people to enact reasonable boundaries with you.
Anyone reading this that is chronically ill I guarantee you is going to feel so validated by most of this. And anyone who isn’t chronically ill, then there is no way for you to truly understand. And we don’t blame you or hold it against you that you don’t truly understand. We know you couldn’t possibly. But we also need you to try to understand as best as you can. Please have enough common courtesy and respect for us to just let us have some peace. Just try to think through what you are doing and saying. We are overwhelmed, tired, and feel like shit. Just let us rest. And, on the few occasions where we feel good enough to go do things, don’t make assumptions about our illness. Just be happy we got a little time off from this shit show of sickness and we got to enjoy ourselves for a change.
Ok, hopping down off my soapbox and now am going to need about 6 hours of recovery just from writing this. I appreciate the people who truly love me and care. You mean a lot to me. To the other people who are treating me like a circus sideshow - please stop. I am not your long-haul tour guide through a house of oddities and curiosities. I am a human being who doesn’t feel well. These are my boundaries. Please respect them.
The next article in this series will be back to my chronological story, and not another lecture where people feel scolded, I promise! LOL. And I will probably post something non long-haul related for the next post so that you all don’t get as tired of hearing about it as I am of talking about it. Haha! Stay tuned. Much love to you all!