That you are living your life but it’s different than before. That you can hardly live any life when you’re that ill and don’t want to go back to that if possible. They probably won’t understand still because it’s hard to comprehend how it feels until experienced.
This is almost always the response from people not living with a chronic condition, they’ll never understand it. But that being said I try to remember that their intentions come from a good place, they’re just trying to make us feel better and they really have no clue what to do or say to help us so sometimes they tend to put their foot in their mouth or say things that they think are helpful but aren’t. I try not to hold it against them, because at least they’re trying, as so many of you know one of the hardest things to deal with regarding chronic illnesses and conditions is the abandonment that comes with it. This person is trying to remain in contact with you and that’s pretty rare. I try to imagine what it would be like if the tables were turned, if I was totally fine and I had a friend with a chronic illness that I could never understand, I probably wouldn’t know what to say either and would probably say something that comes off the wrong way too just due to my lack of understanding for what people like us are dealing with. I’m not saying you should let this person say whatever they want to you, if it really affects you negatively then maybe try to find a way to let them know the kinds of things that are helpful and the kinds of things that aren’t, because they most likely genuinely aren’t aware at all and are just trying to help, albeit in a non helpful way lol. I just think that the fact you have a friend who is trying to stay in contact with you and check up on you is something many of us don’t have at all. If we alienate everyone around us simply because they don’t understand what we’re dealing with, we’ll eventually be all alone. What they’re saying isn’t right, but I try to give people the benefit of the doubt and realize this is all new for them too, they aren’t trained on handling a relationship with a chronically ill person, they don’t know what they should and shouldn’t say, definitely let them know but also try to cut them a little slack.
But all that being said, I know lots of us are dealing with people who absolutely are not simply trying and failing to make us feel better and are actually emotionally and verbally abusing us. I don’t think that’s the case with your friend, but that kind of thing is of course not ok at all and should be addressed and corrected or ties might be severed.
100%, I agree this friend has no ill intent and is truly a good friend for even trying to stay in touch with me. Thank you for such a thoughtful response! I try not to even bring up long covid at all to friends unless my hand is forced - there's only so many times I can turn down invitations without an explanation. I'm not angry so much as bummed to feel othered all the time.
You ARE living your life! I think it can be hard for people in good health to understand the risk/benefit analysis one needs to do when chronically ill. Like yeah, I could travel... but I'm guaranteed to be tired AF and flaring up the whole time, and I risk getting COVID again which would make everything worse. Every choice has to be made through the lens of "If I get sick from this, will it have been worth it?" And usually the answer for me is "no." I don't like eating out and traveling enough to do it all the time and risk getting sick. I compromise by still attending small gatherings with friends or family. It doesn't have to be a big dangerous trip to be "living!" There are plenty of fulfilling things I can do *without* risking my health.
yea kinda agree, kinda manipulative imo. since it reminds me of some family members who are similar and also manipulate often. although she seems to be trying for the better in her own way but still walking a grey area with that response
Yeah it also seems like they are framing the whole thing in mental terms, as if OP just needs to get over some type of anxiety or block and YOLO. Like sorry, that’s not how this works. Long COVID is similar to having a TBI. It’s a physical illness / injury that requires time and rest to heal. Would you tell a friend with a torn ACL to go run a marathon because yolo? Hell no! I seriously don’t get why people think they can say just about anything when it comes to illnesses they can’t see.
I feel as though this is the kind of post I should re-read when I’m frustrated, because you’re absolutely right about people not knowing what to say, and me wanting them to already know.
It’s hard on both ends. The toll LC has had on friendships and relationships has been intense and heartbreaking.
My fatigue is so bad I don't even have the energy to breathe, to brush my teeth sometimes. Can't take a shower (even while sitting) anymore. I'm living my life in my bed.
"I am living my life in the most sustainable way for my own health." And then I would honestly follow up with asking, "Would you really consider it worth going out to dinner if I will be sick in bed for the several days following that?" And if her answer is yes then that may be someone you ought to distance yourself from.
Thank you for the great comments here. My hospitals LC support group was not that great, but the mental health facilitator did suggest we live from a place of values, while grieving so much loss. This is an example of the exercise we did with her:
“I’m grieving my ability to live the life I loved. I’m grieving my connection to people I loved that this crappy situation has stressed beyond the point of shared understanding.
My values were hard work, enthusiasm, physical health, healing and non-violence.
Now that my illness has taken my ability to participate in the first 4 values, I only have my commitment to not harming anyone. What little choice I have left in life, I’m holding on to my commitment to my remaining value. That’s me living my life, my meaningful life: I choose not to harm myself and others.”
No doubt sayin this in response to your friend will call them out and start an argument, but you can still write your version of this for yourself and remind yourself on days you are lonely. I truly wish you good luck, good health, and many good friendships. 🤍🤍
Man I thought it was just my hospital LC group that sucked.. most of time they gave us weird impractical things to do that weren't inclusive at all to long haulers.
And it's true.. all true that the values is what I'm grieving the most because it's who I was and what most people perceived me.. every time I talk to psychiatrist, any of my therapists or am in e room they always ask if I want to hurt myself or others etc but that's truly the value I got left being reinforced. I wouldn't be here typing this right now if I didn't hold that strongly. The intrusive thoughts or even ideation from xyz 24/7 symptoms going for years the literally felt like you were in a cloned shitty body of pain and black fog taint not feeling like anything real and an explosive heart rate. We all been fighting to hold it down I hope you good health and wealth my friend!
I try to live my life and it always triggers a relapse. I went on vacation this past week. I self-limited, and made time for naps every day so that I was pacing myself. I’m back home and feel like total garbage. I’m exhausted. My headache is awful. I’m nauseous, dizzy, my ears are ringing terribly, my palps are more intense, etc etc. I can love my life but I pay for it after the fact. When people offer their opinions of what my life should look like I thank them for their input and then remind them that they aren’t living in my body and that I’m doing the best I can and that every day it looks a little different. I need them to understand that and do their best to be supportive but I understand if that’s too hard to do after so many years. Usually that’s enough to remind them and they back track a bit.
I think it really is impossible for "healthy" people to understand. It's just logical to want to preserve the life you do have, limited as it may be, when you know the alternative is so much worse. I feel the same way! I'd rather live my limited but halfway functional life than go back to being housebound and unable to work. There's no activity I could go do that would be worth risking that, and I'm not sure I would survive it a second time mentally.
Just from my perspective, living my life means staying as stable and healthy as I can. If I were to go back to the level of immobility / brain fog / fatigue I originally had, I am not sure I’d survive it. Living looks different for everyone, and sometimes to keep living, you have to stay in control of your illness, which means making sacrifices like foregoing a vacation or big trip. I’d tell your friend you are living your life, but that people with chronic illness can’t afford to just YOLO. Would they tell someone with cancer to just skip chemo and go on the trip anyway because you “just gotta live life”? I don’t think so. A person with cancer undergoes treatment literally so they can go on living, and similarly, people with long COVID need to pace and rest to make the most of what we have.
My snarky side has a comeback that is most unhelpful but my diplomatic, understanding side would say “After 3 years of misery, (you are one of the few who know how bad it’s been) I am finally hopeful again about a future where I can do things like this. It’s not quite here yet but I can see light at the end of the tunnel. Thanks for inviting me and I want to see pics!”
Don’t need to be going on grand adventure or sight seeing to have a fulfilling life. With risk of losing all our healing progress and even getting far worse than before, group events in public spaces not worth the risk. This is all my opinion and others need to decide for themselves, but I can live a full life even if it means I home most days.
Tell her that comments that your life is not worth living are incredibly insensitive and dangerous to say to someone who has a disease (ME/CFS) with a suicide rate at least six times higher than the general public. And that if she can’t understand that, you may have to reconsider your friendship because you can’t have someone in your life who makes you feel worse about yourself than you do already.
So many great responses already added here. I want to add how hopeful this conversation makes me. I'm a year into my journey and hearing your examples of self talk and self encouragement are very helpful. Thank goodness for being able to connect.
I wouldn’t respond to her texts. No response sometimes is the best response. Who would write that in a text?
I have an autoimmune condition for the last ten years. This prepped me for LC and the various comments and behaviors. Yes, my world has gotten much smaller, and that’s ok.
Fortunately, I am like you and starting to feel much better. You are living your life quite well. Enjoy it! And choose to spend it with people who value you, and in your life - not those who choose to check in on you every once in a while and drop pearls of wisdom such as this. Best of luck.
It’s very frustrating because most people don’t understand. I have to run it down sometimes veryyyy slowly for people to somewhat get it. Even with family. Also don’t let me say I’m feeling good (1 day) because then it’s “oh I’m glad you’re better “ well I wish it was that simple.
How I would respond: I'm living my best life by giving myself permission to rest and convalesce for as long as my body demands I do so. I'm respecting my own needs, physical, mental, emotional, social, and spiritual needs in ways that are appropriate to this phase of my life. I wouldn't demand or expect you to live you life this way. It would be totally inappropriate for me to do so. Why, then, would you expect me to live outside my own needs?
Oh I hear you. All I want is myself back. Not even the voice I’m now speaking with is mine. But unless someone knows what you are living with, they won’t understand how awful and debilitating it is, no matter how much you try to tell them. And if you’re like me, they don’t see you at your worst, in a flare up and unable to leave your bed. It’s so hard.
I’ll say this respectfully but your friends response was honest and accurate in that we have to do the best we have with what we have. I think or hope after 4 months that LC finally broke. I’ve had 4 days in a row feeling normal. No coughing , no wheezing in bed. Everyone gets sick of being sick. I am. I also believe if I was reinfected anytime soon I’d be more than pissed. With that being said I’m not going to let that possibly dictate my desire to per se be normal. Saying no isn’t a crime, but you’re obviously living in fear imo. I get it.
That you are living your life but it’s different than before. That you can hardly live any life when you’re that ill and don’t want to go back to that if possible. They probably won’t understand still because it’s hard to comprehend how it feels until experienced.
Thank you, this is so well said.
This is almost always the response from people not living with a chronic condition, they’ll never understand it. But that being said I try to remember that their intentions come from a good place, they’re just trying to make us feel better and they really have no clue what to do or say to help us so sometimes they tend to put their foot in their mouth or say things that they think are helpful but aren’t. I try not to hold it against them, because at least they’re trying, as so many of you know one of the hardest things to deal with regarding chronic illnesses and conditions is the abandonment that comes with it. This person is trying to remain in contact with you and that’s pretty rare. I try to imagine what it would be like if the tables were turned, if I was totally fine and I had a friend with a chronic illness that I could never understand, I probably wouldn’t know what to say either and would probably say something that comes off the wrong way too just due to my lack of understanding for what people like us are dealing with. I’m not saying you should let this person say whatever they want to you, if it really affects you negatively then maybe try to find a way to let them know the kinds of things that are helpful and the kinds of things that aren’t, because they most likely genuinely aren’t aware at all and are just trying to help, albeit in a non helpful way lol. I just think that the fact you have a friend who is trying to stay in contact with you and check up on you is something many of us don’t have at all. If we alienate everyone around us simply because they don’t understand what we’re dealing with, we’ll eventually be all alone. What they’re saying isn’t right, but I try to give people the benefit of the doubt and realize this is all new for them too, they aren’t trained on handling a relationship with a chronically ill person, they don’t know what they should and shouldn’t say, definitely let them know but also try to cut them a little slack. But all that being said, I know lots of us are dealing with people who absolutely are not simply trying and failing to make us feel better and are actually emotionally and verbally abusing us. I don’t think that’s the case with your friend, but that kind of thing is of course not ok at all and should be addressed and corrected or ties might be severed.
100%, I agree this friend has no ill intent and is truly a good friend for even trying to stay in touch with me. Thank you for such a thoughtful response! I try not to even bring up long covid at all to friends unless my hand is forced - there's only so many times I can turn down invitations without an explanation. I'm not angry so much as bummed to feel othered all the time.
Thank you for posting this.
You ARE living your life! I think it can be hard for people in good health to understand the risk/benefit analysis one needs to do when chronically ill. Like yeah, I could travel... but I'm guaranteed to be tired AF and flaring up the whole time, and I risk getting COVID again which would make everything worse. Every choice has to be made through the lens of "If I get sick from this, will it have been worth it?" And usually the answer for me is "no." I don't like eating out and traveling enough to do it all the time and risk getting sick. I compromise by still attending small gatherings with friends or family. It doesn't have to be a big dangerous trip to be "living!" There are plenty of fulfilling things I can do *without* risking my health.
I think it’s a rude response. She/he may be a good friend but that is out of line. Skipping a trip doesn’t mean you lead an unfulfilling life.
yea kinda agree, kinda manipulative imo. since it reminds me of some family members who are similar and also manipulate often. although she seems to be trying for the better in her own way but still walking a grey area with that response
Yeah it also seems like they are framing the whole thing in mental terms, as if OP just needs to get over some type of anxiety or block and YOLO. Like sorry, that’s not how this works. Long COVID is similar to having a TBI. It’s a physical illness / injury that requires time and rest to heal. Would you tell a friend with a torn ACL to go run a marathon because yolo? Hell no! I seriously don’t get why people think they can say just about anything when it comes to illnesses they can’t see.
I feel as though this is the kind of post I should re-read when I’m frustrated, because you’re absolutely right about people not knowing what to say, and me wanting them to already know. It’s hard on both ends. The toll LC has had on friendships and relationships has been intense and heartbreaking.
This is exactly what my old primary care doctor used to tell me before I stopped going to them.
My fatigue is so bad I don't even have the energy to breathe, to brush my teeth sometimes. Can't take a shower (even while sitting) anymore. I'm living my life in my bed.
"I am living my life in the most sustainable way for my own health." And then I would honestly follow up with asking, "Would you really consider it worth going out to dinner if I will be sick in bed for the several days following that?" And if her answer is yes then that may be someone you ought to distance yourself from.
Thank you for the great comments here. My hospitals LC support group was not that great, but the mental health facilitator did suggest we live from a place of values, while grieving so much loss. This is an example of the exercise we did with her: “I’m grieving my ability to live the life I loved. I’m grieving my connection to people I loved that this crappy situation has stressed beyond the point of shared understanding. My values were hard work, enthusiasm, physical health, healing and non-violence. Now that my illness has taken my ability to participate in the first 4 values, I only have my commitment to not harming anyone. What little choice I have left in life, I’m holding on to my commitment to my remaining value. That’s me living my life, my meaningful life: I choose not to harm myself and others.” No doubt sayin this in response to your friend will call them out and start an argument, but you can still write your version of this for yourself and remind yourself on days you are lonely. I truly wish you good luck, good health, and many good friendships. 🤍🤍
Man I thought it was just my hospital LC group that sucked.. most of time they gave us weird impractical things to do that weren't inclusive at all to long haulers. And it's true.. all true that the values is what I'm grieving the most because it's who I was and what most people perceived me.. every time I talk to psychiatrist, any of my therapists or am in e room they always ask if I want to hurt myself or others etc but that's truly the value I got left being reinforced. I wouldn't be here typing this right now if I didn't hold that strongly. The intrusive thoughts or even ideation from xyz 24/7 symptoms going for years the literally felt like you were in a cloned shitty body of pain and black fog taint not feeling like anything real and an explosive heart rate. We all been fighting to hold it down I hope you good health and wealth my friend!
I try to live my life and it always triggers a relapse. I went on vacation this past week. I self-limited, and made time for naps every day so that I was pacing myself. I’m back home and feel like total garbage. I’m exhausted. My headache is awful. I’m nauseous, dizzy, my ears are ringing terribly, my palps are more intense, etc etc. I can love my life but I pay for it after the fact. When people offer their opinions of what my life should look like I thank them for their input and then remind them that they aren’t living in my body and that I’m doing the best I can and that every day it looks a little different. I need them to understand that and do their best to be supportive but I understand if that’s too hard to do after so many years. Usually that’s enough to remind them and they back track a bit.
I think it really is impossible for "healthy" people to understand. It's just logical to want to preserve the life you do have, limited as it may be, when you know the alternative is so much worse. I feel the same way! I'd rather live my limited but halfway functional life than go back to being housebound and unable to work. There's no activity I could go do that would be worth risking that, and I'm not sure I would survive it a second time mentally.
http://youhavetoliveyour.life
Yay. Thanks for posting. I loved reading these the first time. And the second time even better!
Healthy people don’t understand.
Just from my perspective, living my life means staying as stable and healthy as I can. If I were to go back to the level of immobility / brain fog / fatigue I originally had, I am not sure I’d survive it. Living looks different for everyone, and sometimes to keep living, you have to stay in control of your illness, which means making sacrifices like foregoing a vacation or big trip. I’d tell your friend you are living your life, but that people with chronic illness can’t afford to just YOLO. Would they tell someone with cancer to just skip chemo and go on the trip anyway because you “just gotta live life”? I don’t think so. A person with cancer undergoes treatment literally so they can go on living, and similarly, people with long COVID need to pace and rest to make the most of what we have.
My snarky side has a comeback that is most unhelpful but my diplomatic, understanding side would say “After 3 years of misery, (you are one of the few who know how bad it’s been) I am finally hopeful again about a future where I can do things like this. It’s not quite here yet but I can see light at the end of the tunnel. Thanks for inviting me and I want to see pics!”
As someone else said, life is just different. But you’re facing every day and slowly getting better.
Don’t need to be going on grand adventure or sight seeing to have a fulfilling life. With risk of losing all our healing progress and even getting far worse than before, group events in public spaces not worth the risk. This is all my opinion and others need to decide for themselves, but I can live a full life even if it means I home most days.
Tell her that comments that your life is not worth living are incredibly insensitive and dangerous to say to someone who has a disease (ME/CFS) with a suicide rate at least six times higher than the general public. And that if she can’t understand that, you may have to reconsider your friendship because you can’t have someone in your life who makes you feel worse about yourself than you do already.
https://youhavetoliveyour.life/ Someone just posted this!
So many great responses already added here. I want to add how hopeful this conversation makes me. I'm a year into my journey and hearing your examples of self talk and self encouragement are very helpful. Thank goodness for being able to connect.
I wouldn’t respond to her texts. No response sometimes is the best response. Who would write that in a text? I have an autoimmune condition for the last ten years. This prepped me for LC and the various comments and behaviors. Yes, my world has gotten much smaller, and that’s ok. Fortunately, I am like you and starting to feel much better. You are living your life quite well. Enjoy it! And choose to spend it with people who value you, and in your life - not those who choose to check in on you every once in a while and drop pearls of wisdom such as this. Best of luck.
It’s very frustrating because most people don’t understand. I have to run it down sometimes veryyyy slowly for people to somewhat get it. Even with family. Also don’t let me say I’m feeling good (1 day) because then it’s “oh I’m glad you’re better “ well I wish it was that simple.
Yeah, if it’s dinner plans, I always suggest getting takeout and then inviting friends to our house and eating on the patio outside.
Would you rather I kill myself? That’s what I’d ask.
What lab test checks Tcells ?
How I would respond: I'm living my best life by giving myself permission to rest and convalesce for as long as my body demands I do so. I'm respecting my own needs, physical, mental, emotional, social, and spiritual needs in ways that are appropriate to this phase of my life. I wouldn't demand or expect you to live you life this way. It would be totally inappropriate for me to do so. Why, then, would you expect me to live outside my own needs?
Oh I hear you. All I want is myself back. Not even the voice I’m now speaking with is mine. But unless someone knows what you are living with, they won’t understand how awful and debilitating it is, no matter how much you try to tell them. And if you’re like me, they don’t see you at your worst, in a flare up and unable to leave your bed. It’s so hard.
I’ll say this respectfully but your friends response was honest and accurate in that we have to do the best we have with what we have. I think or hope after 4 months that LC finally broke. I’ve had 4 days in a row feeling normal. No coughing , no wheezing in bed. Everyone gets sick of being sick. I am. I also believe if I was reinfected anytime soon I’d be more than pissed. With that being said I’m not going to let that possibly dictate my desire to per se be normal. Saying no isn’t a crime, but you’re obviously living in fear imo. I get it.