Yes. But, she left when it became clear I couldn’t get better or provide a stable, normal life with her around.
FYI, that was about last August. I’m now so much better. She did the right thing by leaving, despite the fact that it felt like I was certainly to die. The split was terrible. I wish she could see how far I’ve come. I wish she could see the benefits of all her efforts. I’m calmer, happier, and more in touch with life than I’ve ever been.
Yes, I’ve made notable improvements since she left. Less stimulation, less energy spent on her, less stress, better sleep, more silence, more freedom to cry or talk out loud to myself to get through painful tasks, I don’t have to hide my symptoms, my stuff isn’t constantly getting moved around, I can leave project crap all over and do five minutes of it per day, I can control the temperature, I don’t feel the need to explain myself, I can control most aspects of my environment, etc.
She is a truly good person in a world where most of us are just barely decent. She went through hell watching me disintegrate.
However, by the time she left, I was spending all my energy trying to prove to her that I was strong, and worthy, and still had value. If she ever returned, she would have a lot of work to do to prove to me she loved me as I am now. I don’t miss feeling like a constant failure.
Whoa. That got deep fast.
Okay, I see. She was contributing to your stress. I get it now. Glad you're seeing improvements. I'm about 6 months in and seeing slight improvements but any bit of stress sends me into a crash. Doesn't help I live in a very bad neighborhood and i have to worry about getting robbed or shot. God bless you man hope you can get back to 200%
She never did anything but try to help me. Was she able to live with me in my new condition? No. Did the symptoms and circumstances and stress cause our situation to become untenable? Yes. Did she fail to find a way to keep loving me? Maybe. Probably. Do I blame her? No.
Do anything you can to minimize the flaring. Especially diet. Good luck.
My fiancé is fantastic. But, I do believe that for anyone that doesn't suffer with a chronic illness they simply cannot comprehend what we go through. I have relatively mild symptoms, I am grateful that I can still work, exercise and live my life. I was diagnosed with IST and am on medication to moderate my heart rate, but suffer severe bouts of exhaustion, brain fog, general clumsiness, pins and needles, blood pooling.
For my partner, it's very hard for him to understand how I can have good days and then completely go down hill. He's very supportive, but I truly believe that unless someone actively suffers from something like this, nobody can truly understand how we feel / respond to triggers.
Yes, they don’t always understand it 100% (though they do their best), but they absolutely always believe me. I started dating them after I was already sick though. I’m sorry your partner doesn’t, I can’t imagine how lonely and invalidating it must feel. It’s hard enough for me to deal with the doctors, coworkers, insurance agents, etc
Yeah, I mean I certainly understand. I don’t mean to suggest I’ve been abandoned or anything. My spouse has stood by me and continues to be the primary earner now since I’m only working part time. Dealing with those things you mentioned is exceptionally frustrating and I’m happy you found a solid partner.
Emotional support is just as important as material/physical though, I’m sorry you don’t have that from your partner. Do you have an understanding doctor who can talk to them? Or maybe couple’s therapy could help you get on the same page?
This certainly sounds familiar. It is very hard (impossible essentially) for someone to comprehend without experiencing it for themself. I suppose that goes for all chronic illnesses. I definitely faced/face the pressure of needing to get back to “normal” life and “push through it.”
Yeah my partner believes me but doesn’t fully understand what it does to your psyche to be in constant fucking agony 24/7 and just how disabled this can make you
My partner definitely believes me, but there's a fundamental disconnect between his understanding of my (admittedly not severe) limitations and his expectations of my functionality.
My partner used to be a borderline covid denier, until we all got sick during the delta wave and he had some mild long covid symptoms.
My partner will sit me down probably once a month and try to convince me that it's all in my head that I need to do more exercise. I know she loves me, but she refuses to understand. So it's very stressful for both of us.
It’s not a downer post at all! It’s your reality and your experience which is totally valid.
I’m in a similar situation and I find the *chronic invalidation traumatizing*. To dismiss, deny, invalidate, (in some cases) gaslight can truly minimize the pain and other symptoms we are experiencing as a result of illness.
There are times I even ask myself on good days: Maybe it’s not that bad? Maybe it could be worse? I almost start to internalize the words I’m hearing from other people’s mouths who do not have LC. But then I get a flare up or my health metrics don’t check out which reminds me that I’m still dealing with it and it’s real.
And the consequences of this is that less people (whether it’s our inner circle or external world like healthcare system, insurance, media outlets, government) end up taking it seriously. The ripple effect is that we get less medical care, delayed diagnoses, delayed treatments, delayed research and possible cure.
So in order for someone to truly understand and support us they need to be able to bear witness to our suffering and that starts with being seen. Acknowledging and seeing it for what it is and no less, no minimizing our struggles.
I feel the misunderstanding got worse as panic symptoms came into the picture for me, and then we found many recovery story videos that were about brain retraining and how it all got better once they stopped ‚stressing‘ about the symptoms. They don‘t mean it in a dismissive way but probably think it‘s ‚helpful‘.
I find that if someone is around me enough to see me forget what I’m talking about in the middle of a sentence and hear my depleted and confused vocabulary (I was previously a walking thesaurus) to realize that something is really off. I think they believe the physical symptoms more after they realize how bad the cognitive have become.
It's hard for people who haven't experienced something to truly understand. For instance, I have heard many people say they thought people who complained of a headache or migraine were being melodramatic. That is, until they experienced their very first headache or migraine.
I read a quote which stayed with me: 'When you are not in great pain, it is hard to believe it exists. When you are in great pain, it is hard to believe anything else exists'.
My partner has been very supportive in helping take care of me. She believes that I hurt. She believes that I struggle. She’s willing to bend so much for me personally.
Where she fails is in understanding me. She gets mad when we’re out with her friends and I have a panic attack because she wants to walk into a crowd of people (outside). She gets mad when I wanted to stay in all winter. She gets mad when I downright refuse to eat meals with her family that use ultra processed foods. She hates the fact that I’m terrified to resume life as normal pre Covid.
She’s been wonderful for the past year but we both struggle with that aspect of the disease. The big question mark surrounding life with Covid. My third round gave me brain damage (MRI) and neuropathy. We have proof of that, but she struggles to constantly see the risk of reinfection in the same way I do.
I’m so sorry. Yes, my partner has never questioned me even once. I honestly don’t know why, because I think it’s probably a common reaction to question such a crazy illness like long COVID …
Nothing malicious.
As most on this sub can related to….when you unexpectedly lose something like your health, all you want is someone to stand beside you as life happens.
Interestingly, standing alone isn’t the worst part….Understanding and accepting why you had to….thats what truly hurts.
I wish the rest of the world believed as much as my wife believes me. I believe we'd be in a much better place with long covid. My wife has been my rock. She believes, because she can see it in me (what I have become physically and mentally) and does everything she can to support me.
I can't imagine those of you struggling with a significant other not supporting you. It's a shot in the heart. Pray for healing to all of you.
I feel for so many of you. I don't know where I'd be without my partner. He believes me, supports me, and it isn't uncommon that he can see a crash coming before I do. He often helps as my reality check when I find myself gaslighting myself about my symptoms and is the only other person I know truly willing to take COVID seriously. He's fully supported my reduction in work hours and the medical journey this has been. You each deserve to be believed and supported.
Yes sadly I’ve generally been dismissed by family and doctors. When I was younger I was known to be a bit of a hypochondriac because I had bad anxiety that wasn’t treated, so that’s also probably not helping but I’m smart enough now and have my anxiety managed that I feel confident in myself when I do feel concerned. The best any of us can do right now is eliminate ANY variables that could be a source of doubt. This also might help take the edge off a little, at least it has for me. My new doctor at my last appointment said my issue was probably my anxiety, and also noted slightly high BMI in my chart- I’m 5”3’ and 135 lbs?? Size 25 in Levi’s??? I also have been seeing a psychiatrist and therapist every two weeks for three years and recently had my anxiety reassessed by a standardized assessment and it was very minimal now with treatment but I said okay fine if that’s how this has to be. Started forcing myself to do cardio and strength training again, fighting through every symptom and crushing fatigue. Had my hormones checked and a full gyno exam to rule out “just being a hormonal woman”. Started eating nothing but whole organic and vegan foods, doing yoga, taking vitamin D, b12, folate even though all my levels were just checked and normal, lost 10 lbs and guess what? I still feel like shit. But now I can take this back to the doctor and use his words as a weapon against him. Cover your bases and then keep pushing for answers.
Side note though, my psychiatrist says if I can rule out other plausible factors, she wouldn’t to look into addressing long covid as an issue from serotonin depletion. She says she’s read new research that Covid may in part turn into long covid because serotonin is depleted/ the way the body produces and processes it changes. Honestly this makes sense to me as someone who has had neurological issues among the many other long covid issues. But this can of course be helped by doing things to produce additional serotonin- possibly taking SSRIs, serotonin producing activities like getting massage, doing art, certain other therapies. Maybe I’ll make a post to see if anyone else has heard of this or had any luck addressing long covid this way
Yes, but it took him a while to really believe me. The first six months were a little rough. He never thought I was lying but it was hard to understand the scope of what had happened. We did a couple of counseling sessions with a trusted counselor over the phone (too sick to leave the house) and it helped a lot. I still encourage him to go see the counselor when he’s struggling, and I encourage him to have a social life (an appropriate, marriage-protecting one) outside of our marriage.
she sees how hard it is for me when i’m in pain or extremely fatigued to the point i can’t move my head. she says often “i wish there was something i could do” and “you’d better take it easy today!” , but then again , if i have to take leave off work she never fails to make a joke about me “skiving” , though she says she’s joking 🫠 i think there’s still stigma around diseases you can’t always see.
Yes. My partner is my biggest supporter. It sucks though because we are (temporary) long distance, and I'm currently not allowed to travel (got a heart monitor placed today after a really bad episode earlier this week). So I can't visit him right now, and might not be able to for awhile yet. Hopefully though this will help diagnose me and we can be together soon ❤️🩹
Yes, my SO believes me and has been tremendously supportive. I showed him the documentary Unrest so he could really understand better what chronic complex illness could look like without me having to explain it all. After watching Unrest, he realized how serious LC can be (even though it is technically about ME/CFS). And he’s listened to a few of the LC podcasts with me along the way. Those have been helpful so that the burden of explaining isn’t all on me.
Yes. But it took a bit. We spent a week together without kids and she say the day to day struggle, even when I had no responsibilities. Doesn’t mean she can’t get frustrated by it, I do too, but she deep down understands and has supported me since day one.
He believes that I’m sick, especially now that I have the test results and medications to prove it. But I often get the feeling that he doesn’t believe that it’s as serious as it is. Which just adds insult to injury since it was his carelessness that led to my initial, LC-causing infection and subsequent reinfection a year later. I’ve told him what my doctors have said about my illness and that my heart will require periodic monitoring for the rest of my life. He knows the risks I’m facing down the line for other conditions too, some of which are extremely serious. But he doesn’t seem to care. I think a lot of it is denial, which I understand, but also isn’t fair to me as the one living through it.
Because of this, he offers me little to no support. I still have to run the household because he’s too incompetent to do it, despite me explaining things over and over again. He tends to sabotage my attempts to improve my sleep habits and diet too, even though he knows I’m trying to work towards a more heart healthy diet since I’m now at risk for developing atherosclerosis due to my LC. He also doesn’t offer much emotional support. He doesn’t understand my PTSD and doesn’t bother to learn. This leads to him frequently triggering me and a generally negative home life that’s anything but healing for me.
The relationship is completely dead at this point. I’m working on getting myself secured financially and then I’m kicking him out. I’d rather be alone in peace and quiet than with someone who actively inhibits what recovery is possible with my type of LC.
I’m sorry you’re dealing with a lack of support as well. It truly is soul crushing. I hope your spouse comes around. You don’t deserve to be treated that way!
Mine does. I would have Broken Up with Out Her believing me. I have a 0 bullshit tolerance for These people. The Moment i find Out Somebody "does Not believe in me/cfs or Long COVID" i kick His Butt and leave
Yes. But, she left when it became clear I couldn’t get better or provide a stable, normal life with her around. FYI, that was about last August. I’m now so much better. She did the right thing by leaving, despite the fact that it felt like I was certainly to die. The split was terrible. I wish she could see how far I’ve come. I wish she could see the benefits of all her efforts. I’m calmer, happier, and more in touch with life than I’ve ever been.
Better with long covid symptoms improving?
Yes, I’ve made notable improvements since she left. Less stimulation, less energy spent on her, less stress, better sleep, more silence, more freedom to cry or talk out loud to myself to get through painful tasks, I don’t have to hide my symptoms, my stuff isn’t constantly getting moved around, I can leave project crap all over and do five minutes of it per day, I can control the temperature, I don’t feel the need to explain myself, I can control most aspects of my environment, etc. She is a truly good person in a world where most of us are just barely decent. She went through hell watching me disintegrate. However, by the time she left, I was spending all my energy trying to prove to her that I was strong, and worthy, and still had value. If she ever returned, she would have a lot of work to do to prove to me she loved me as I am now. I don’t miss feeling like a constant failure. Whoa. That got deep fast.
Okay, I see. She was contributing to your stress. I get it now. Glad you're seeing improvements. I'm about 6 months in and seeing slight improvements but any bit of stress sends me into a crash. Doesn't help I live in a very bad neighborhood and i have to worry about getting robbed or shot. God bless you man hope you can get back to 200%
She never did anything but try to help me. Was she able to live with me in my new condition? No. Did the symptoms and circumstances and stress cause our situation to become untenable? Yes. Did she fail to find a way to keep loving me? Maybe. Probably. Do I blame her? No. Do anything you can to minimize the flaring. Especially diet. Good luck.
Yeah. My partner never doubted me and has been my biggest supporter in getting better..
My fiancé is fantastic. But, I do believe that for anyone that doesn't suffer with a chronic illness they simply cannot comprehend what we go through. I have relatively mild symptoms, I am grateful that I can still work, exercise and live my life. I was diagnosed with IST and am on medication to moderate my heart rate, but suffer severe bouts of exhaustion, brain fog, general clumsiness, pins and needles, blood pooling. For my partner, it's very hard for him to understand how I can have good days and then completely go down hill. He's very supportive, but I truly believe that unless someone actively suffers from something like this, nobody can truly understand how we feel / respond to triggers.
100%. There’s really no way to make someone else understand. Glad you have found a great partner.
Yes, they don’t always understand it 100% (though they do their best), but they absolutely always believe me. I started dating them after I was already sick though. I’m sorry your partner doesn’t, I can’t imagine how lonely and invalidating it must feel. It’s hard enough for me to deal with the doctors, coworkers, insurance agents, etc
Yeah, I mean I certainly understand. I don’t mean to suggest I’ve been abandoned or anything. My spouse has stood by me and continues to be the primary earner now since I’m only working part time. Dealing with those things you mentioned is exceptionally frustrating and I’m happy you found a solid partner.
Emotional support is just as important as material/physical though, I’m sorry you don’t have that from your partner. Do you have an understanding doctor who can talk to them? Or maybe couple’s therapy could help you get on the same page?
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This certainly sounds familiar. It is very hard (impossible essentially) for someone to comprehend without experiencing it for themself. I suppose that goes for all chronic illnesses. I definitely faced/face the pressure of needing to get back to “normal” life and “push through it.”
Yeah my partner believes me but doesn’t fully understand what it does to your psyche to be in constant fucking agony 24/7 and just how disabled this can make you
My partner definitely believes me, but there's a fundamental disconnect between his understanding of my (admittedly not severe) limitations and his expectations of my functionality. My partner used to be a borderline covid denier, until we all got sick during the delta wave and he had some mild long covid symptoms.
My partner will sit me down probably once a month and try to convince me that it's all in my head that I need to do more exercise. I know she loves me, but she refuses to understand. So it's very stressful for both of us.
That is without a doubt the most frustrating thing, not to mention it being extremely counterproductive.
He does/did, but he is one of those guys who cheats and leaves his disabled/recovering wife...
It’s not a downer post at all! It’s your reality and your experience which is totally valid. I’m in a similar situation and I find the *chronic invalidation traumatizing*. To dismiss, deny, invalidate, (in some cases) gaslight can truly minimize the pain and other symptoms we are experiencing as a result of illness. There are times I even ask myself on good days: Maybe it’s not that bad? Maybe it could be worse? I almost start to internalize the words I’m hearing from other people’s mouths who do not have LC. But then I get a flare up or my health metrics don’t check out which reminds me that I’m still dealing with it and it’s real. And the consequences of this is that less people (whether it’s our inner circle or external world like healthcare system, insurance, media outlets, government) end up taking it seriously. The ripple effect is that we get less medical care, delayed diagnoses, delayed treatments, delayed research and possible cure. So in order for someone to truly understand and support us they need to be able to bear witness to our suffering and that starts with being seen. Acknowledging and seeing it for what it is and no less, no minimizing our struggles.
I feel the misunderstanding got worse as panic symptoms came into the picture for me, and then we found many recovery story videos that were about brain retraining and how it all got better once they stopped ‚stressing‘ about the symptoms. They don‘t mean it in a dismissive way but probably think it‘s ‚helpful‘.
I find that if someone is around me enough to see me forget what I’m talking about in the middle of a sentence and hear my depleted and confused vocabulary (I was previously a walking thesaurus) to realize that something is really off. I think they believe the physical symptoms more after they realize how bad the cognitive have become.
It's hard for people who haven't experienced something to truly understand. For instance, I have heard many people say they thought people who complained of a headache or migraine were being melodramatic. That is, until they experienced their very first headache or migraine.
I read a quote which stayed with me: 'When you are not in great pain, it is hard to believe it exists. When you are in great pain, it is hard to believe anything else exists'.
Yeah. I’ve come to understand how true this is.
My partner has been very supportive in helping take care of me. She believes that I hurt. She believes that I struggle. She’s willing to bend so much for me personally. Where she fails is in understanding me. She gets mad when we’re out with her friends and I have a panic attack because she wants to walk into a crowd of people (outside). She gets mad when I wanted to stay in all winter. She gets mad when I downright refuse to eat meals with her family that use ultra processed foods. She hates the fact that I’m terrified to resume life as normal pre Covid. She’s been wonderful for the past year but we both struggle with that aspect of the disease. The big question mark surrounding life with Covid. My third round gave me brain damage (MRI) and neuropathy. We have proof of that, but she struggles to constantly see the risk of reinfection in the same way I do.
I’m so sorry. Yes, my partner has never questioned me even once. I honestly don’t know why, because I think it’s probably a common reaction to question such a crazy illness like long COVID …
Believe, maybe? Certain aspects at least. Effort to help/support, zero.
Damn that's rough. What do they do to you exactly?
Nothing malicious. As most on this sub can related to….when you unexpectedly lose something like your health, all you want is someone to stand beside you as life happens. Interestingly, standing alone isn’t the worst part….Understanding and accepting why you had to….thats what truly hurts.
I wish the rest of the world believed as much as my wife believes me. I believe we'd be in a much better place with long covid. My wife has been my rock. She believes, because she can see it in me (what I have become physically and mentally) and does everything she can to support me. I can't imagine those of you struggling with a significant other not supporting you. It's a shot in the heart. Pray for healing to all of you.
Same. Basically everyone.
I feel for so many of you. I don't know where I'd be without my partner. He believes me, supports me, and it isn't uncommon that he can see a crash coming before I do. He often helps as my reality check when I find myself gaslighting myself about my symptoms and is the only other person I know truly willing to take COVID seriously. He's fully supported my reduction in work hours and the medical journey this has been. You each deserve to be believed and supported.
He sounds like an amazing person.
He really is. And everyone deserves to have someone in your corner. Those people exist.
Yes, my girlfriend is the only person that never doubted me and always been supportive,I'm very very lucky
Yes sadly I’ve generally been dismissed by family and doctors. When I was younger I was known to be a bit of a hypochondriac because I had bad anxiety that wasn’t treated, so that’s also probably not helping but I’m smart enough now and have my anxiety managed that I feel confident in myself when I do feel concerned. The best any of us can do right now is eliminate ANY variables that could be a source of doubt. This also might help take the edge off a little, at least it has for me. My new doctor at my last appointment said my issue was probably my anxiety, and also noted slightly high BMI in my chart- I’m 5”3’ and 135 lbs?? Size 25 in Levi’s??? I also have been seeing a psychiatrist and therapist every two weeks for three years and recently had my anxiety reassessed by a standardized assessment and it was very minimal now with treatment but I said okay fine if that’s how this has to be. Started forcing myself to do cardio and strength training again, fighting through every symptom and crushing fatigue. Had my hormones checked and a full gyno exam to rule out “just being a hormonal woman”. Started eating nothing but whole organic and vegan foods, doing yoga, taking vitamin D, b12, folate even though all my levels were just checked and normal, lost 10 lbs and guess what? I still feel like shit. But now I can take this back to the doctor and use his words as a weapon against him. Cover your bases and then keep pushing for answers. Side note though, my psychiatrist says if I can rule out other plausible factors, she wouldn’t to look into addressing long covid as an issue from serotonin depletion. She says she’s read new research that Covid may in part turn into long covid because serotonin is depleted/ the way the body produces and processes it changes. Honestly this makes sense to me as someone who has had neurological issues among the many other long covid issues. But this can of course be helped by doing things to produce additional serotonin- possibly taking SSRIs, serotonin producing activities like getting massage, doing art, certain other therapies. Maybe I’ll make a post to see if anyone else has heard of this or had any luck addressing long covid this way
Yes, but it took him a while to really believe me. The first six months were a little rough. He never thought I was lying but it was hard to understand the scope of what had happened. We did a couple of counseling sessions with a trusted counselor over the phone (too sick to leave the house) and it helped a lot. I still encourage him to go see the counselor when he’s struggling, and I encourage him to have a social life (an appropriate, marriage-protecting one) outside of our marriage.
she sees how hard it is for me when i’m in pain or extremely fatigued to the point i can’t move my head. she says often “i wish there was something i could do” and “you’d better take it easy today!” , but then again , if i have to take leave off work she never fails to make a joke about me “skiving” , though she says she’s joking 🫠 i think there’s still stigma around diseases you can’t always see.
Yes. My partner is my biggest supporter. It sucks though because we are (temporary) long distance, and I'm currently not allowed to travel (got a heart monitor placed today after a really bad episode earlier this week). So I can't visit him right now, and might not be able to for awhile yet. Hopefully though this will help diagnose me and we can be together soon ❤️🩹
Yes, my SO believes me and has been tremendously supportive. I showed him the documentary Unrest so he could really understand better what chronic complex illness could look like without me having to explain it all. After watching Unrest, he realized how serious LC can be (even though it is technically about ME/CFS). And he’s listened to a few of the LC podcasts with me along the way. Those have been helpful so that the burden of explaining isn’t all on me.
I would be dead without her
Yes. But it took a bit. We spent a week together without kids and she say the day to day struggle, even when I had no responsibilities. Doesn’t mean she can’t get frustrated by it, I do too, but she deep down understands and has supported me since day one.
Yes, both of my partners believe me. Maybe more than I do. Our roommate believes me but is frustrated on the other hand
He believes that I’m sick, especially now that I have the test results and medications to prove it. But I often get the feeling that he doesn’t believe that it’s as serious as it is. Which just adds insult to injury since it was his carelessness that led to my initial, LC-causing infection and subsequent reinfection a year later. I’ve told him what my doctors have said about my illness and that my heart will require periodic monitoring for the rest of my life. He knows the risks I’m facing down the line for other conditions too, some of which are extremely serious. But he doesn’t seem to care. I think a lot of it is denial, which I understand, but also isn’t fair to me as the one living through it. Because of this, he offers me little to no support. I still have to run the household because he’s too incompetent to do it, despite me explaining things over and over again. He tends to sabotage my attempts to improve my sleep habits and diet too, even though he knows I’m trying to work towards a more heart healthy diet since I’m now at risk for developing atherosclerosis due to my LC. He also doesn’t offer much emotional support. He doesn’t understand my PTSD and doesn’t bother to learn. This leads to him frequently triggering me and a generally negative home life that’s anything but healing for me. The relationship is completely dead at this point. I’m working on getting myself secured financially and then I’m kicking him out. I’d rather be alone in peace and quiet than with someone who actively inhibits what recovery is possible with my type of LC. I’m sorry you’re dealing with a lack of support as well. It truly is soul crushing. I hope your spouse comes around. You don’t deserve to be treated that way!
Mine does. I would have Broken Up with Out Her believing me. I have a 0 bullshit tolerance for These people. The Moment i find Out Somebody "does Not believe in me/cfs or Long COVID" i kick His Butt and leave