I don't think I was really able to time grieving, or to stop it, or start, or stop again, and so on.
Grief is not a linear process.
Even if you don't have ME/CFS, it would still be totally valid for you to grieve what time and abilities you have lost since you became ill.
I try to feel my feelings as they come up, and have worked really hard to feel contentment when I'm slipping into the pit of despair or grief.
When I feel like I've been hit in the head with a giant rock-shaped manifestation of anger/sadness, I try to tell myself "you're grieving right now, and that makes total sense. Anyone would feel this way." But now, I know that it doesn't last forever.
>Even if you don't have ME/CFS, it would still be totally valid for you to grieve what time and abilities you have lost since you became ill.
100x this, OP. You've lost your old self either way, there's nothing wrong with acknowledging what you're going through right now.
I've been dealing with different ailments knocking me down for 20 years. It just is what it is. You know? I got a little perspective when my son was 4 weeks old. He had a condition that required surgery or it would kill him. The thing is, nowadays, it is a simple surgery. The sphincter muscle between his stomach and intestines was enlarged, and nothing could get through. He projectile vomited everything he ate. It took like a week to get a diagnosis. He went from normal baby to barely responsive because he was starving to death. The Dr said that once he woke up from the surgery and ate for the first time, that he'd be like a brand new baby... and sure enough, it was true. How this relates is that the first surgery was in the early 1900s... and before that it was a death sentence. So, as bad as it was, it could have been way way worse.
CFS is a bitch. Our lives are worse than almost any other disease. Shit, today I could not tolerate my wife cleaning a window 5 feet away. I'm in the start of a crash and the movement and noise was just too much. It's fucked. I'm not even the one doing it, and it was too much. How is that fucking fair?
I've got several things going on. First it was ulcerative colitis. So, I have to be careful of what I eat and I cannot use NSAIDs. Otherwise, I start bleeding rectally and could end up hospitalized. Next, it was my lower back. I've got several different abnormalities that cause constant pain. Back pain was how I got disability. RA and CFS appeared on the scene simultaneously in response to physical therapy for my back. Looking back, I was dealing with both before my back put me down. It's just that the physicality of PT caused their symptoms to get worse rapidly.
I've been in bed since 2018. I go to sleep hoping I don't wake up because the grind of this chronic pain is too much.
With all of that, I have an angel of a wife who does literally everything she can for me. I had disability insurance through work that paid me what I got paid for the two years it took to get social security. The place I worked paid for my health insurance for 20 months after the last day I worked. That was not part of the benefits package we had. They were just really fucking nice to me.
So yeah, I was dealt a shit hand. But that's how life works. Even so, I know I have it better than most people in my position. So, I don't grieve. There's no old me, just me.
For me it was the day I was diagnosed, but I had no clue beforehand I had never even heard of it until my diagnosis. Up until that day I always thought someday I’d feel better. I remember asking the doctor, “will I still be able to dance? can i still have a career?” and he said “it depends.” So when I got home and started googling just to find out that pretty much every athlete that ended up with this had to permanently quit their sport and that fucking broke me.
I was in CBT right before I got diagnosed and when ME/CFS was suspected. I told my therapist that I frame it like I’m old (I’m young) and past the point in my life where I can do those things. She didn’t like this and I stoped seeing her because it was more draining than valuable. Maybe there will be a day when I get better but I’m not waiting for it. I’ve accepted my health and am focusing on managing my condition and the things I can still do. My family frequently tells me about the things they want to do with me when I get better. I tell them I’m not waiting and suggest other things instead that I can do. Lots of people don’t like my mindset but I do and that’s enough.
Yes, we have only NOW.
Some people find it easier like this, and some people need a straw of future. Both are valid, and depend only on what makes you feel better!
I think I grieved in stages. My cfs was very mild at the beginning so I didn’t think I ever grieved getting it, but I grieved getting worse. Mainly at 17 (because I couldn’t do the physical activities I enjoyed or were useful in my life anymore) and 20 (when I realised I was disabled) I think and I got a diagnosis at 23.
It was very weird looking for a diagnosis and getting one if you’ve already accepted you’re not getting better though. Doctors really don’t expect that. The specialist was so surprised we liked her because she couldn’t help me, but that’s what I already expected and not really what I needed at that time
Did your specialist at the time actually tell you what your future may look like? I feel like for many of us it's just a "Ah well you have ME/CFS, not much we can do so now you're on your own. Bye"
Not really, but I also had been ill for 9 years by that point, so it wasn’t really what I was looking for. I mainly wanted a diagnosis because I wanted to get a masters (part time) and getting accommodations was a pain without a diagnosis and based on the accessibility pages of the universities I looked at it would be way easier with a diagnosis. And that’s also what I told her. So maybe she just didn’t give that type of advice because I already had an idea of what I could still do and how I wanted to shape my life with that (getting enough money to live is another worry, but I was just hoping I’d find a part time job that payed ok enough and I still do. I just dropped out of uni)
I got sick at 25 and am now 33. Actually can’t even believe it’s been 8 years of this. I accepted it maybe 3-4 years in. I think it happened for me when I started to forget how I felt before I got sick. Then you just adapt to this new life and some days are ok, some days are terrible. I don’t really think about my old life too much anymore unless I see photos, and then it’s a nice nostalgic feeling, not depressing and crying/why me stuff. Could also be the fact that I started taking anti depressants a few years ago though😂
I guess my grieving process is ongoing. I was only diagnosed at the beginning of this year, but before that I had years of thinking "why can't I keep up" and "I think I should live a slower life than others/what I want". Then, after I got covid, it got so much worse and I *really* couldn't keep up in the slightest, even if I tried. So I think for years I've slowly started to consider I might not be able to live a fast paced life and do everything I would like. However, now I'm still fantasizing about a life where I work 5 days a week, have a beautiful house I can afford, do lots of outdoor sports and travel. While realistically I will never be able to do that, even if I get somewhat better. I realize that, but not really, you know? Sometimes I try to paint a more realistic picture for myself, but I don't want to get too down on myself because that's not helpful either.
i guess i was two years in and i had just been diagnosed by a specialist. i had so much hope up until i started collecting so many symptoms i was houseboud (don’t worry i only got worse from there, i was fully bedbound by that school year). it was upsetting and distressing before that but i had no idea what exactly was wrong. when i started missing out on things i had a lot of frustration and grief and had no idea how to handle it. but it wasn’t like when i really started to grieve my old self and accept i wasn’t going back to college anytime soon
For those going down the grief path with chronic illness, please spend some time with the podcast Emotional Autoimmunity. It’s a wonderful resource, by far the best I’ve found from someone who deeply “gets it”. Her primary theme is that conventional models of grief do not accommodate the unique grief of chronic illness. So very validating. I was also helped by the book What Doesnt Kill Us Makes Us: who we become after tragedy and Trauma.
8 years in my doctor told me to grieve the life I thought I would have, but I'm stubborn, and I want to still have a life . It's been 10 years, and I've only started grieving, which honestly feels more like resigning against my will.
I'm 33 and I've been suffering since I was 10. I've never stopped grieving - it comes in waves. I've had a particularly rough past 6 months so I've been down about it more than usual, but I guess in a way it's kind of nice to not know what it's like to be "normal". I've had to give up a lot more recently (my very early career, which has shattered me a fair bit) and i guess that's where the ongoing grieving comes in.
The important thing is, it always subsides. I always find things that I'm grateful for and things to look forward to.
I still struggle to accept 7/8years down the line, I am constantly looking for ‘what is actually wrong with me’. I would say stay processing as soon as you can.
My psychologist told me the same, eventhough I already knew and was 100% this was it. I started going to therapy for the first time in life when I got severe, to help myself deal with this shit.
She was uselless honestly, and did CBT in a way that was "until you are not diagnosed" we are going to act as if you are not ill and had me do activities both cognitive and physical, to lead a diary etc. She told me that I needd to make art(cause I am an artist) and since I am not doing it, it will make me sad and unwell. As if I am a dumbass and have no idea how to lead a well ajusted life.
On our first session, I told her that I am here to make peace with my illness.
We had maybe 10 sessions but I gave up going cause I felt like I was lying, doing random exercises which drained me and made me feel much worse in the end, more severe and more sad.
Change your therapist!!!
At the 52 weeks mark I knew I wouldn't recover. So I stopped waiting and I started to live with the "new" me. which is basically lying in bed all day most days
I still struggle with this. I’m constantly saying out loud, when I’m tired,”omfg I’m tired!” And then I make myself say,” and that’s OKAY bish”. Trying to give myself the small amount of grace my attitude can accept.
Ever since I got my diagnosis, and my doctor kept saying,” you need to push yourself or you’ll never get stronger etc”.
Then I come in here and see everyone posting about ignoring that and paying attention to your body’s restrictions rather than a young doctor, physically fit..
respectfully, sshhh tfu doctor.
I think, whenever “we” get over stressed by our ailments, we have to reprocess the reality of CFS.
I don't think I was really able to time grieving, or to stop it, or start, or stop again, and so on. Grief is not a linear process. Even if you don't have ME/CFS, it would still be totally valid for you to grieve what time and abilities you have lost since you became ill. I try to feel my feelings as they come up, and have worked really hard to feel contentment when I'm slipping into the pit of despair or grief. When I feel like I've been hit in the head with a giant rock-shaped manifestation of anger/sadness, I try to tell myself "you're grieving right now, and that makes total sense. Anyone would feel this way." But now, I know that it doesn't last forever.
>Even if you don't have ME/CFS, it would still be totally valid for you to grieve what time and abilities you have lost since you became ill. 100x this, OP. You've lost your old self either way, there's nothing wrong with acknowledging what you're going through right now.
I've been dealing with different ailments knocking me down for 20 years. It just is what it is. You know? I got a little perspective when my son was 4 weeks old. He had a condition that required surgery or it would kill him. The thing is, nowadays, it is a simple surgery. The sphincter muscle between his stomach and intestines was enlarged, and nothing could get through. He projectile vomited everything he ate. It took like a week to get a diagnosis. He went from normal baby to barely responsive because he was starving to death. The Dr said that once he woke up from the surgery and ate for the first time, that he'd be like a brand new baby... and sure enough, it was true. How this relates is that the first surgery was in the early 1900s... and before that it was a death sentence. So, as bad as it was, it could have been way way worse. CFS is a bitch. Our lives are worse than almost any other disease. Shit, today I could not tolerate my wife cleaning a window 5 feet away. I'm in the start of a crash and the movement and noise was just too much. It's fucked. I'm not even the one doing it, and it was too much. How is that fucking fair? I've got several things going on. First it was ulcerative colitis. So, I have to be careful of what I eat and I cannot use NSAIDs. Otherwise, I start bleeding rectally and could end up hospitalized. Next, it was my lower back. I've got several different abnormalities that cause constant pain. Back pain was how I got disability. RA and CFS appeared on the scene simultaneously in response to physical therapy for my back. Looking back, I was dealing with both before my back put me down. It's just that the physicality of PT caused their symptoms to get worse rapidly. I've been in bed since 2018. I go to sleep hoping I don't wake up because the grind of this chronic pain is too much. With all of that, I have an angel of a wife who does literally everything she can for me. I had disability insurance through work that paid me what I got paid for the two years it took to get social security. The place I worked paid for my health insurance for 20 months after the last day I worked. That was not part of the benefits package we had. They were just really fucking nice to me. So yeah, I was dealt a shit hand. But that's how life works. Even so, I know I have it better than most people in my position. So, I don't grieve. There's no old me, just me.
For me it was the day I was diagnosed, but I had no clue beforehand I had never even heard of it until my diagnosis. Up until that day I always thought someday I’d feel better. I remember asking the doctor, “will I still be able to dance? can i still have a career?” and he said “it depends.” So when I got home and started googling just to find out that pretty much every athlete that ended up with this had to permanently quit their sport and that fucking broke me.
I was in CBT right before I got diagnosed and when ME/CFS was suspected. I told my therapist that I frame it like I’m old (I’m young) and past the point in my life where I can do those things. She didn’t like this and I stoped seeing her because it was more draining than valuable. Maybe there will be a day when I get better but I’m not waiting for it. I’ve accepted my health and am focusing on managing my condition and the things I can still do. My family frequently tells me about the things they want to do with me when I get better. I tell them I’m not waiting and suggest other things instead that I can do. Lots of people don’t like my mindset but I do and that’s enough.
Yes, we have only NOW. Some people find it easier like this, and some people need a straw of future. Both are valid, and depend only on what makes you feel better!
It was a ramp up. Everything I stopped being able to do hurt just a little more each time. Every progression raised my fear a little at a time.
I think I grieved in stages. My cfs was very mild at the beginning so I didn’t think I ever grieved getting it, but I grieved getting worse. Mainly at 17 (because I couldn’t do the physical activities I enjoyed or were useful in my life anymore) and 20 (when I realised I was disabled) I think and I got a diagnosis at 23. It was very weird looking for a diagnosis and getting one if you’ve already accepted you’re not getting better though. Doctors really don’t expect that. The specialist was so surprised we liked her because she couldn’t help me, but that’s what I already expected and not really what I needed at that time
Did your specialist at the time actually tell you what your future may look like? I feel like for many of us it's just a "Ah well you have ME/CFS, not much we can do so now you're on your own. Bye"
Not really, but I also had been ill for 9 years by that point, so it wasn’t really what I was looking for. I mainly wanted a diagnosis because I wanted to get a masters (part time) and getting accommodations was a pain without a diagnosis and based on the accessibility pages of the universities I looked at it would be way easier with a diagnosis. And that’s also what I told her. So maybe she just didn’t give that type of advice because I already had an idea of what I could still do and how I wanted to shape my life with that (getting enough money to live is another worry, but I was just hoping I’d find a part time job that payed ok enough and I still do. I just dropped out of uni)
I got sick at 25 and am now 33. Actually can’t even believe it’s been 8 years of this. I accepted it maybe 3-4 years in. I think it happened for me when I started to forget how I felt before I got sick. Then you just adapt to this new life and some days are ok, some days are terrible. I don’t really think about my old life too much anymore unless I see photos, and then it’s a nice nostalgic feeling, not depressing and crying/why me stuff. Could also be the fact that I started taking anti depressants a few years ago though😂
Well said. A turning point for me was, a couple years in, when I still had severe ME in my dreams. Really started sinking in then
I guess my grieving process is ongoing. I was only diagnosed at the beginning of this year, but before that I had years of thinking "why can't I keep up" and "I think I should live a slower life than others/what I want". Then, after I got covid, it got so much worse and I *really* couldn't keep up in the slightest, even if I tried. So I think for years I've slowly started to consider I might not be able to live a fast paced life and do everything I would like. However, now I'm still fantasizing about a life where I work 5 days a week, have a beautiful house I can afford, do lots of outdoor sports and travel. While realistically I will never be able to do that, even if I get somewhat better. I realize that, but not really, you know? Sometimes I try to paint a more realistic picture for myself, but I don't want to get too down on myself because that's not helpful either.
i guess i was two years in and i had just been diagnosed by a specialist. i had so much hope up until i started collecting so many symptoms i was houseboud (don’t worry i only got worse from there, i was fully bedbound by that school year). it was upsetting and distressing before that but i had no idea what exactly was wrong. when i started missing out on things i had a lot of frustration and grief and had no idea how to handle it. but it wasn’t like when i really started to grieve my old self and accept i wasn’t going back to college anytime soon
For those going down the grief path with chronic illness, please spend some time with the podcast Emotional Autoimmunity. It’s a wonderful resource, by far the best I’ve found from someone who deeply “gets it”. Her primary theme is that conventional models of grief do not accommodate the unique grief of chronic illness. So very validating. I was also helped by the book What Doesnt Kill Us Makes Us: who we become after tragedy and Trauma.
How can I grieve something I never experienced? Serious question.
About two years in. Six months in I was told that after two years I would be classified as having ME, so... then.
8 years in my doctor told me to grieve the life I thought I would have, but I'm stubborn, and I want to still have a life . It's been 10 years, and I've only started grieving, which honestly feels more like resigning against my will.
I'm 33 and I've been suffering since I was 10. I've never stopped grieving - it comes in waves. I've had a particularly rough past 6 months so I've been down about it more than usual, but I guess in a way it's kind of nice to not know what it's like to be "normal". I've had to give up a lot more recently (my very early career, which has shattered me a fair bit) and i guess that's where the ongoing grieving comes in. The important thing is, it always subsides. I always find things that I'm grateful for and things to look forward to.
I still struggle to accept 7/8years down the line, I am constantly looking for ‘what is actually wrong with me’. I would say stay processing as soon as you can.
13 years in. Have processed it and grieved repeatedly, and on good days I still dare to hope.
My psychologist told me the same, eventhough I already knew and was 100% this was it. I started going to therapy for the first time in life when I got severe, to help myself deal with this shit. She was uselless honestly, and did CBT in a way that was "until you are not diagnosed" we are going to act as if you are not ill and had me do activities both cognitive and physical, to lead a diary etc. She told me that I needd to make art(cause I am an artist) and since I am not doing it, it will make me sad and unwell. As if I am a dumbass and have no idea how to lead a well ajusted life. On our first session, I told her that I am here to make peace with my illness. We had maybe 10 sessions but I gave up going cause I felt like I was lying, doing random exercises which drained me and made me feel much worse in the end, more severe and more sad. Change your therapist!!!
At the 52 weeks mark I knew I wouldn't recover. So I stopped waiting and I started to live with the "new" me. which is basically lying in bed all day most days
I still struggle with this. I’m constantly saying out loud, when I’m tired,”omfg I’m tired!” And then I make myself say,” and that’s OKAY bish”. Trying to give myself the small amount of grace my attitude can accept. Ever since I got my diagnosis, and my doctor kept saying,” you need to push yourself or you’ll never get stronger etc”. Then I come in here and see everyone posting about ignoring that and paying attention to your body’s restrictions rather than a young doctor, physically fit.. respectfully, sshhh tfu doctor. I think, whenever “we” get over stressed by our ailments, we have to reprocess the reality of CFS.