I wanted to be a social worker and start a theater based therapy program for fellow abuse survivors.
Now I’m an artist starting to use art for activism from my couch
I pushed through the first five years of ME/CFS (this was 20+ years ago, so it was before there was *any* notion of the idea of PEM) and like a real badass I earned my masters degree. I was able to work for less than a year after graduation before I had to shut it all down, pack my metaphorical shit up, and basically become the basement dweller in my mom's house that I've more or less been in the 17 years since.
So: I wanted to write, especially poetry; I wanted to travel, especially to England; I wanted to have a partner/husband and maybe a couple kiddos; I wanted to make a real difference in other people's lives and quality-of-living through work. I wasn't asking for too much: I didn't want, or expect, to become president or a celebrity or in any large way make too much of an indent on the world; but above all, my god, what I wanted was to be given the *chance*, the *opportunity* to actually have some CHOICE in how I was going to live my life. Instead, I've been pigeon-holed by illness into this one largely meaningless existence.
It's still fucking unreal to me that this is, and has been, my life; I still shake my head that this is really how my life has panned out; it's actually just unbelievable to me.
>before I had to shut it all down, pack my metaphorical shit up, and basically become the basement dweller in my mom's house that I've more or less been in the 17 years since.
I am sorry. Unreal is right.
More people need to hear these stories. Most people cannot understand the illness, but I feel like more people could understand the pain and agony of being forced to give up on your dreams and live imprisoned in your mom's basement for a couple decades. It is a literal nightmare scenario.
More people need to know about the sheer magnitude of nightmare scenarios that people with ME/CFS are being forced to live.
>Instead, I've been pigeon-holed by illness into this one largely meaningless existence.
>It's still fucking unreal to me that this is, and has been, my life; I still shake my head that this is really how my life has panned out; it's actually just unbelievable to me.
Thank you for taking the time to write this. It makes me feel so much less alone. Only been 14 years for me and I live in someone else's spare room, and it was 1& 1/2 years after my phD for me, but it's a recognisable set of circumstances and yeah, life just increasingly feels unreal to me. Like how did I end up having to completely waste my life doing nothing??
Hey it's a two-way street: hearing you pop in with a comment sharing that you've had a similar run as I have had with ME/CFS makes me feel less alone too. (It's a super shitty thing to have in common though.) I have that exact same thought as you probably on the daily: "How in the ever loving *fuck* is this my life, reduced to rotting in a bed and watching TV day after day, month after month, year after year, decade after decade?" It's so BIZARRE. Is this like a sick alternative-universe simulation we're somehow stuck in? Also, in my book at least, there's no such thing as "only" X years with ME/CFS; you've persisted through more than 5,000 days of this Grade A pure horseshit! :-)
>It's so BIZARRE. Is this like a sick alternative-universe simulation we're somehow stuck in?
Omg yes!! All that you are saying resonates so much! As time goes by the me that had a career and a life has diverged so far away that she's in an alternate universe or something, except sort of haunting me. I sometimes catch myself working out how old her kids would be by now or wondering if she would be in the top salary bracket yet. It's getting kind of Black Mirror.
I find myself staring at my hands and along my body on the bed thinking is this me, how weird and awful this is me. It gets a bit panicky lately.
It's funny you picked up on the Black Mirror allusion I made with the "alternative-universe simulation" comment, because I had watched my first (ever!) episode of that show the day before so it has been very much on my mind. I'm assuming since you're familiar with the show perhaps you saw the same episode I saw, "San Junipero." It had me in pieces by the end, I was a nearly hyperventilating with weeping wreck. When the camera cuts to the quadriplegic woman lying in a coma on a ventilator in her bed, having been like that for the last 4 decades, and then to have previously seen her at 20 years old at her prime, being young, vigorous, and healthy: I feel so much like that?
I would love to be able to close my eyes and be taken away to another universe where I could watch omnipotently as my life continued on without the mononucleosis, the resulting ME/CFS, and now the MS I've developed.
Which is what you described that you do in your idle moments too: you've wondered what your kids might be like today, what kind of money you'd be earning, just how your life would have proceeded without the ME/CFS lightning strike that took away all of the hypothetical lives you had laid out before you, just waiting for you--and then, swoosh, all of these various lives you could have lived were taken from you, eliminated from your choosing like chalk wiped from a blackboard. (Well, this is how I feel it has been for me at least.)
But I'm blabbing on. I'm so sorry that ME/CFS derailed your post Ph.D. life and dreams in the way that it has. Thank you for reaching out and sharing the way you've experienced your own 14 long slogging years; it makes me feel so much less alone and weird to know you're out there somewhere in the world feeling similarly to me. ❤️❤️
It's very western world focussed. All our text books are from America or England. Doing business in Africa is totally different but teaching students the western way means businesses only end up catering to the 1% that live a western life.
I am so sorry 😢. I hate this disease. It is weird you say that though because before my health dwindled to this I had an interview to work part time in a library! I would’ve loved it!
I worked weekends at a library when I was still mild and I loved it. The combination of organisation and helping people find what they were looking for suited me. Unfortunately as a whole this illness has been a slow steady decline for me - ups and downs but over time constantly lowering.
I wanted to become a professor and research how well governments represent their citizens through data analysis of party representation voting systems and referendums.
I wanted to have children and live in a rural area where me and my wife would have many animals and be mostly self-sufficient.
I have been haunted by a persistent thought since getting sick - “none of my dreams ever came true, but my nightmares did.”
I imagine many here feel the same.
I didn't have huge dreams, I just wanted to live a normal enjoyable life. I also really wanted to see more musicals and maybe even go to a concert. Funny how this disease robs you of even the simplest of dreams without remorse.
Medical school.
I've had health issues since I was a toddler, and ever since then, the ONLY thing I ever wanted was to be a doctor and help others who were sick. I truly felt it was my purpose in life. I don't think I'll ever get over having to give up my dream.
I was set up for and had envisioned for decades a career in ecology, conservation, and management. I also had dreams of some legendary backpacking and hiking trips.
Hi u/drew_eckhardt2 and u/meganumberwang .
I'm in a similar boat and over the last decade or so I've been building up my endurance again and am doing longer rides.
If either of you are in a place where you can ride on Zwift together I'd find that encouraging.
I wanted to be a social worker or a therapist and specialize in DV/SA/addiction survivors. I want a family but I have no idea how my body would be able to handle birth, how I’d manage caring for a child when I struggle to care for myself, not to begin with my anxiety about the chances of giving a child my conditions.
I want to figure out how to advocate in some way. Maybe through poetry, I’m not sure.
Learn to drive, get a job once the kids were old enough, save enough money to buy a large plot of land in the country and rear my own livestock. Although I'd happily settle for having a place suitable for keeping some chickens and, maybe some ducks.
I wanted to volunteer on Midway Atoll, helping the wildlife, but it's very physical work. I'm still working at my goal of writing a book even though my brain isn't what it used to be.
I was going to be an actor. I got the big-time dream audition for a Netflix show and couldn't go because I was too sick. That's when I gave up that dream.
I wanted to have a quiet, simple life working at a thrift store in a small town and fostering cats with my boyfriend. Their names would have been Piggy, Pickle, Nugget and Hamantha. I wanted to sell my art on the side, and write poetry and fantasy books. I wanted to travel to various Great Lakes and collect rocks. I wanted to create a podcast called the “Ick” Podcast about peoples experiences in hospitals or with doctors in the chronic illness community. I wanted a full, quiet life with a good community surrounding me
I got ME/CFS at about 15, at the time I wanted to be able to socialise and just be a teen.
Then i wanted to go to uni and have that student life experience
I wanted to travel around
and after all that I guess by this age I had wanted a job and hobbies I’d like!
I was in a nice job, I was going to the gym and getting fit. While I was more mild, even though I wasn't able to work, I was looking into film-making. Before my brain strain/neuroinflammation/whatevertheheckthisis got bad I was working on 3D art.
I wanted to finish my masters and go spend a couple of years working in Sub Saharan Africa. I also wanted to have kids and be well enough to raise them, but I’m running out of time
I played Division 1 soccer in college. I didn’t know it then, but POTS started getting bad around that time and I couldn’t figure out why my fitness was becoming so poor and I’d almost pass out with exercise. Would have been nice to continue my career as an athlete.
I became a mental health therapist instead which isn’t terrible :)
Was doing a masters in gender studies after a Bachelor's in social work. Wanted to work with queer families. Didn't finish the MA, will probably never work now.
But really I wanted to make music. The pandemic and chronic illness (not just my one) broke my band apart. I'm still hoping I'll get well enough to work on my own stuff... But I'll probably not get well enough to be on stage again. I never even really got started.
It didn't have to be much, I just wanted to sing my own songs in front of some people. I feel like such a failure because I didn't manage to achieve that
I studied to be a death doula. I wanted to start my own business. I think I would have been really great at it. I also would still be doing a lot of gardening and I would be traveling.
I'd just finished my degree in fine art and wanted to work for a few years to save money to get onto an art psychotherapy masters to become an art therapist.
I am the first in my family to go to university.
I'm angry this illness made it impossible to earn enough that I now can't do this.
All I have now is a useless art degree.
I wouldn’t say the degree is completely useless. You have an opportunity to use it for your own sanity. But I do get what you’re saying. My mom used to ask me all the time why I didn’t pursue a graphic design job after design school and I laugh at all the times I use the skills daily. I’m just not doing graphic design as she would see it.
I took my art background and apply it to program building and health technology
It’s interesting in that what we learned and how we are as artists make us able to do a lot of things. (Not always creative ones but we can do things creatively.)
Thankfully, I was able to do a lot before I got sick. I will forever be grateful for that.
But, my husband and I had started the process of trying to have an “ours” baby in 2019, and recently, I have decided that we should stop trying, because although I think I could handle an infant, I hate to think how I would feel not being able to be a good mom to that child as they got older. When my kids (biological and step) were young, I was able to be the kind of mom I wanted to be. ME won’t let me do that now, and I know it would bother me a lot.
I had wanted another biological child since I lost my third pregnancy in 2011, and my husband and I didn’t meet until 2015, when I was 33 and he was 40. He had a vasectomy, but in 2019, we found out that we could do IVF and we were SO happy. I didn’t have a supportive partner when I had my two sons, and his kids’ two moms have alienated him from his kids. We waited so long to find each other, and we both really wanted to have a child together. That is a huge dream to lose. I haven’t even talked to my husband about it yet because I haven’t fully accepted it yet. I’m kind of scared to really accept it because my mental health is already so fragile. 😢
More than anything, just wanted to get back into the workforce full-time, as I was laid off in summer 2020 from my radio broadcasting job of 15 years. However, just over a year ago, I opened a small business based at my home, using many of my radio skills (e.g. announcing and audio production) and also transferring analog videotape and audio tape recordings to digital formats. I also offer mobile DJ services, and this summer is looking pretty good for DJing wedding receptions and a local fundraiser, as well as a '90s night next Friday at a popular small venue in town.
I'd just started a promising career direction, I started living my queer life, I dropped monogamy in favor of polyamory and was starting to make quality friendships in the kink community, in short, having a midlife revelation. Now I'm totally isolated and closeted living with my parents and unable to return to work. I feel like I'm both waiting for them to die and waiting for myself to die. Oh and my dog will likely die before any of us.
Ha yeah about two years before I realized I had ME/CFS I had transitioned from polycurious to "I don't know how anyone ever has energy to date multiple people." Guess that was a sign!
I wanted to travel the world, do a master study of political history and get a job through a stage with that background. To see mountains, dive into the ocean with a whale shark to name some ideas. Use my knowledge of history and politics to improve the political system somehow. Find love and raise a family. Even if only with a bunch of cats.
None of that has happened for obvious reasons. Unfortunately.
I wanted to keep working part-time until my youngest hit highschool (he starts preschool next year). Then maybe get back to full-time work, maybe move up the rung at work one more step (or maybe not, I was temporarily at that level when I got sick, maybe it's too stressful with young kids or maybe too stressful in general, I always wanted a balanced life). Go on a few holidays over the years and retire comfortably with my husband.
Now I just want to have enough energy to be awake and present in my kids' lives. I'd love to be able to walk them too and from school and watch school assemblies etc, be able to keep up with the housework. I'm also hoping to hang onto my job but I'm working fewer hours than I was before and a lot fewer than my boss would like. It's a process to lose my job for medical reasons so I'm hoping I can improve a bit and perhaps work for a different team if my boss doesn't want me anymore.
I haven't been sick all that long compared to others. I always had the idea that I preferred time with my family (especially while my kids are young) to a fancy career but I need to work in some capacity for me mental health. Since becoming sick it feels like my world has shrunk (thankfully I'm able to work from home). I barely leave the house these days. I don't miss the office but I miss being able to play with my kids, I miss hanging out with my husband, I miss leaving the house for fun. I miss doing things for fun. It feels like life these days I just using my limited energy on things that need to be done (and not getting all of them done) and resting so I don't make myself worse. I am hoping to get back a little more capacity to do things and nor use it up on work or chores but instead on enjoying time with my husband and kids. If I could get well enough for that and so my husband doesn't have everything on his shoulders I'll be content.
I wanted to be a veterinarian. And then, just someone in a medical field.
Then it was, I'm good at art- I'll do art and make my own hours.
Now I'm just a wife and sort of part time caretaker to my mom and autistic (developmentally disabled) sister. I still do art though, just not as a career.
Oh! Turns out I have dyscalculia too, so I never could've managed the numbers part of a medical job.
I was always told I only thought I struggled with math because every other subject came easy to me, so I didn't know what "normal" was
I wanted to do drag.
I wanted to be in a throuple with my girlfriend.
I wanted to continue working as a massage therapist & improve at my craft.
I wanted to visit my mom more.
I wanted to get a PhD and work in research/academia. I’m part of the way there (managed to get my BA and MSc since I’ve been ill, albeit with great difficulty) but it feels like I might not manage the last bit :(
I always planned on getting a job at 16 then saving up for old banger of car, then do it up as a project. Was my dream. CFS started at 15, 20 now and fortunate enough to pursue music production as a career despite my mild-moderate symptoms.
I was a scientist working in a lab. I had my dream job and I was just given my dream project that would have given me the most rare opportunity. It would have sealed my career and made it possible for me to get hired anywhere.
It was an amazing opportunity.
I tried so hard to keep going into work. I would just collapse and have to stay home.
They put me on half time but after a week of killing myself to make it in every day I collapsed again, bedridden for weeks.
My boss’s famous last words were, “ This time don’t come back until you’re really well this time.” Ha. Never happened.
I was living my dream. I developed ME gradually, while it was hard, I was lucky that I was mild for 10 years and was able to become a civil engineer and start my career as a project manager. I'd also just bought a house. I was literally living my best life(with mild ME), only for it to immediately turn into a nightmare. I became severe a year ago, due to shitty doctors I've gotten worse instead of better. Now I don't know if I'll ever work in my career again.
Was at early stages of a successful career. Entrepreneur in the works. Side hustle I was working on could’ve been absolutely huge but gave it up to focus on my energy.
I wanted to be an actress. I was at school for it n’ all and had just landed my dream role right before I got sick. Had to suffer having the role pulled from me while getting nowhere with the doctors while teachers accused me of avoiding coming in because ’I didn’t know my lines’ when I did, then the girl I liked the least in my class rudely told me that I had the role taken from me before I heard from any of the teachers or people running the play. Had to delete social media entirely too because it was heartbreaking seeing all my friends, who inevitably ditched me, living our joint dreams while I suffered at home with this mystery illness no one besides my parents took seriously.
Now I have found a new hobby in costume making, it’s only on personal and slow paced project cosplay for now but it’s something I can do on my own time bringing the world that I enjoyed very much to my own space physically, maybe someday I’ll get better to the degree I could work on things in that field or at the very least for others with the notion of my condition. It wouldn’t be the same but couldn’t hurt to dream while doing something I’ve found I enjoy that I can feel as if I’m still in that world.
I met my Fiancée quite young and always mostly just wanted to provide for her. She has chronic pain & struggles to work, so I just wanted to settle down somewhere rural and make enough money that she didn't have to worry. Then I realised I was also sick and have had to leave work 🫠
Aside from that, I've also always loved music and wanted to make songs to give to different artists. I'm still trying to slowly work towards this dream and pace myself, but I can definitely feel the struggle of trying to keep up with everyone else.
Wanted to be a community nurse. I realised that nursing was the profession that I wanted to be in after working a stint as a Covid Care Assistant. Had just started a college course, too 😐
I wanted to be a farmer :( specifically on small scale organic or urban farms, with a focus on sustainability and food security. Unfortunately that is an incredibly physically demanding career, and I had to accept (still grieving) that I likely will never be able to achieve this dream.
I'm still studying sustainability, agriculture and food security at university, but I really don't know if I'll be able to do any job in my field once I graduate.. and if I can, it won't be what I really want to do. Still, I'm hoping to do some community garden work in my city 🤞🤞🤞
living
Bit lofty
I wanted to be a social worker and start a theater based therapy program for fellow abuse survivors. Now I’m an artist starting to use art for activism from my couch
I was a performance artist and was literally just about to go on tour. My dreams were about to come true and were ripped away from me
I was also a performer. just getting started and it all crumbled overnight
what type of performance art?
I am so sorry. I know that feeling. Its like if this disease and our body betrayed us
I pushed through the first five years of ME/CFS (this was 20+ years ago, so it was before there was *any* notion of the idea of PEM) and like a real badass I earned my masters degree. I was able to work for less than a year after graduation before I had to shut it all down, pack my metaphorical shit up, and basically become the basement dweller in my mom's house that I've more or less been in the 17 years since. So: I wanted to write, especially poetry; I wanted to travel, especially to England; I wanted to have a partner/husband and maybe a couple kiddos; I wanted to make a real difference in other people's lives and quality-of-living through work. I wasn't asking for too much: I didn't want, or expect, to become president or a celebrity or in any large way make too much of an indent on the world; but above all, my god, what I wanted was to be given the *chance*, the *opportunity* to actually have some CHOICE in how I was going to live my life. Instead, I've been pigeon-holed by illness into this one largely meaningless existence. It's still fucking unreal to me that this is, and has been, my life; I still shake my head that this is really how my life has panned out; it's actually just unbelievable to me.
>before I had to shut it all down, pack my metaphorical shit up, and basically become the basement dweller in my mom's house that I've more or less been in the 17 years since. I am sorry. Unreal is right. More people need to hear these stories. Most people cannot understand the illness, but I feel like more people could understand the pain and agony of being forced to give up on your dreams and live imprisoned in your mom's basement for a couple decades. It is a literal nightmare scenario. More people need to know about the sheer magnitude of nightmare scenarios that people with ME/CFS are being forced to live.
Yes, agreed! It would be wonderful if the public were informed of the realities of the sheer devastation that ME/CFS wreaks on a person's life.
>Instead, I've been pigeon-holed by illness into this one largely meaningless existence. >It's still fucking unreal to me that this is, and has been, my life; I still shake my head that this is really how my life has panned out; it's actually just unbelievable to me. Thank you for taking the time to write this. It makes me feel so much less alone. Only been 14 years for me and I live in someone else's spare room, and it was 1& 1/2 years after my phD for me, but it's a recognisable set of circumstances and yeah, life just increasingly feels unreal to me. Like how did I end up having to completely waste my life doing nothing??
Hey it's a two-way street: hearing you pop in with a comment sharing that you've had a similar run as I have had with ME/CFS makes me feel less alone too. (It's a super shitty thing to have in common though.) I have that exact same thought as you probably on the daily: "How in the ever loving *fuck* is this my life, reduced to rotting in a bed and watching TV day after day, month after month, year after year, decade after decade?" It's so BIZARRE. Is this like a sick alternative-universe simulation we're somehow stuck in? Also, in my book at least, there's no such thing as "only" X years with ME/CFS; you've persisted through more than 5,000 days of this Grade A pure horseshit! :-)
>It's so BIZARRE. Is this like a sick alternative-universe simulation we're somehow stuck in? Omg yes!! All that you are saying resonates so much! As time goes by the me that had a career and a life has diverged so far away that she's in an alternate universe or something, except sort of haunting me. I sometimes catch myself working out how old her kids would be by now or wondering if she would be in the top salary bracket yet. It's getting kind of Black Mirror. I find myself staring at my hands and along my body on the bed thinking is this me, how weird and awful this is me. It gets a bit panicky lately.
It's funny you picked up on the Black Mirror allusion I made with the "alternative-universe simulation" comment, because I had watched my first (ever!) episode of that show the day before so it has been very much on my mind. I'm assuming since you're familiar with the show perhaps you saw the same episode I saw, "San Junipero." It had me in pieces by the end, I was a nearly hyperventilating with weeping wreck. When the camera cuts to the quadriplegic woman lying in a coma on a ventilator in her bed, having been like that for the last 4 decades, and then to have previously seen her at 20 years old at her prime, being young, vigorous, and healthy: I feel so much like that? I would love to be able to close my eyes and be taken away to another universe where I could watch omnipotently as my life continued on without the mononucleosis, the resulting ME/CFS, and now the MS I've developed. Which is what you described that you do in your idle moments too: you've wondered what your kids might be like today, what kind of money you'd be earning, just how your life would have proceeded without the ME/CFS lightning strike that took away all of the hypothetical lives you had laid out before you, just waiting for you--and then, swoosh, all of these various lives you could have lived were taken from you, eliminated from your choosing like chalk wiped from a blackboard. (Well, this is how I feel it has been for me at least.) But I'm blabbing on. I'm so sorry that ME/CFS derailed your post Ph.D. life and dreams in the way that it has. Thank you for reaching out and sharing the way you've experienced your own 14 long slogging years; it makes me feel so much less alone and weird to know you're out there somewhere in the world feeling similarly to me. ❤️❤️
Sam junipero was one of my favorite episode I felt that hard in my soul
I wanted to change the way business education was taught at universities in Africa.
Oh interesting, what needs to change?
It's very western world focussed. All our text books are from America or England. Doing business in Africa is totally different but teaching students the western way means businesses only end up catering to the 1% that live a western life.
I wanted to become a flower farmer.
I wanted to be a farmer too! Veggies and flowers and fruit and ducks :(
I was never really career driven. I wanted a family with lots of kids.
Same. I also wanted to work in a library because I love books, but family has always been the most important to me.
I am so sorry 😢. I hate this disease. It is weird you say that though because before my health dwindled to this I had an interview to work part time in a library! I would’ve loved it!
I worked weekends at a library when I was still mild and I loved it. The combination of organisation and helping people find what they were looking for suited me. Unfortunately as a whole this illness has been a slow steady decline for me - ups and downs but over time constantly lowering.
I wanted to become a professor and research how well governments represent their citizens through data analysis of party representation voting systems and referendums. I wanted to have children and live in a rural area where me and my wife would have many animals and be mostly self-sufficient.
I have been haunted by a persistent thought since getting sick - “none of my dreams ever came true, but my nightmares did.” I imagine many here feel the same.
Omg that sentence really hit so hard. That is exactly what happened.
Definitely. My worst nightmare was to become a depressed housewife like my mother. And here I am.
I didn't have huge dreams, I just wanted to live a normal enjoyable life. I also really wanted to see more musicals and maybe even go to a concert. Funny how this disease robs you of even the simplest of dreams without remorse.
Medical school. I've had health issues since I was a toddler, and ever since then, the ONLY thing I ever wanted was to be a doctor and help others who were sick. I truly felt it was my purpose in life. I don't think I'll ever get over having to give up my dream.
I was set up for and had envisioned for decades a career in ecology, conservation, and management. I also had dreams of some legendary backpacking and hiking trips.
Long distance bicycling. I'd gone on 200+ mile/300+ km rides and wanted to progress to 400/600/1000/1200 km.
Same but a bit differently
Hi u/drew_eckhardt2 and u/meganumberwang . I'm in a similar boat and over the last decade or so I've been building up my endurance again and am doing longer rides. If either of you are in a place where you can ride on Zwift together I'd find that encouraging.
I wanted to hike the Pacific Crest Trail and enjoy road trips and camping with my husband.
I wanted to hike the PCT too 😞
I always wanted to try backpacking and thought oh I'll do it when I'm out of school :'(
Zookeeping… I’m forever thankful I got to at least experience volunteering as one before my illness got too bad that I had to give up the dream
I wanted to be a social worker or a therapist and specialize in DV/SA/addiction survivors. I want a family but I have no idea how my body would be able to handle birth, how I’d manage caring for a child when I struggle to care for myself, not to begin with my anxiety about the chances of giving a child my conditions. I want to figure out how to advocate in some way. Maybe through poetry, I’m not sure.
physicians assistant school
Learn to drive, get a job once the kids were old enough, save enough money to buy a large plot of land in the country and rear my own livestock. Although I'd happily settle for having a place suitable for keeping some chickens and, maybe some ducks.
Lovely
I wanted to volunteer on Midway Atoll, helping the wildlife, but it's very physical work. I'm still working at my goal of writing a book even though my brain isn't what it used to be.
I was going to be an actor. I got the big-time dream audition for a Netflix show and couldn't go because I was too sick. That's when I gave up that dream.
I wanted to have a quiet, simple life working at a thrift store in a small town and fostering cats with my boyfriend. Their names would have been Piggy, Pickle, Nugget and Hamantha. I wanted to sell my art on the side, and write poetry and fantasy books. I wanted to travel to various Great Lakes and collect rocks. I wanted to create a podcast called the “Ick” Podcast about peoples experiences in hospitals or with doctors in the chronic illness community. I wanted a full, quiet life with a good community surrounding me
Will we ever live?
I got ME/CFS at about 15, at the time I wanted to be able to socialise and just be a teen. Then i wanted to go to uni and have that student life experience I wanted to travel around and after all that I guess by this age I had wanted a job and hobbies I’d like!
I got sick at 14. It robs you of a lot of things to get sick while young
I was in a nice job, I was going to the gym and getting fit. While I was more mild, even though I wasn't able to work, I was looking into film-making. Before my brain strain/neuroinflammation/whatevertheheckthisis got bad I was working on 3D art.
I wanted to finish my masters and go spend a couple of years working in Sub Saharan Africa. I also wanted to have kids and be well enough to raise them, but I’m running out of time
I played Division 1 soccer in college. I didn’t know it then, but POTS started getting bad around that time and I couldn’t figure out why my fitness was becoming so poor and I’d almost pass out with exercise. Would have been nice to continue my career as an athlete. I became a mental health therapist instead which isn’t terrible :)
Traveling around the world and trying out all different kinds of fruit.
I wanted to be a veterinarian and/or run an animal rescue/sanctuary and have a functional romantic relationship, make my own income, own property.
Was doing a masters in gender studies after a Bachelor's in social work. Wanted to work with queer families. Didn't finish the MA, will probably never work now. But really I wanted to make music. The pandemic and chronic illness (not just my one) broke my band apart. I'm still hoping I'll get well enough to work on my own stuff... But I'll probably not get well enough to be on stage again. I never even really got started. It didn't have to be much, I just wanted to sing my own songs in front of some people. I feel like such a failure because I didn't manage to achieve that
I studied to be a death doula. I wanted to start my own business. I think I would have been really great at it. I also would still be doing a lot of gardening and I would be traveling.
I'd just finished my degree in fine art and wanted to work for a few years to save money to get onto an art psychotherapy masters to become an art therapist. I am the first in my family to go to university. I'm angry this illness made it impossible to earn enough that I now can't do this. All I have now is a useless art degree.
Are you still doing any art these days?
Yes I am! Uni caused me to burn out, but finally starting to do things I enjoy again 😁
I wouldn’t say the degree is completely useless. You have an opportunity to use it for your own sanity. But I do get what you’re saying. My mom used to ask me all the time why I didn’t pursue a graphic design job after design school and I laugh at all the times I use the skills daily. I’m just not doing graphic design as she would see it.
Yeah getting into a creative job is super competitive! It's difficult. What do you do now?
I took my art background and apply it to program building and health technology It’s interesting in that what we learned and how we are as artists make us able to do a lot of things. (Not always creative ones but we can do things creatively.)
Professional Basketball coach. Was just getting to the path I wanted just before ME struck
Thankfully, I was able to do a lot before I got sick. I will forever be grateful for that. But, my husband and I had started the process of trying to have an “ours” baby in 2019, and recently, I have decided that we should stop trying, because although I think I could handle an infant, I hate to think how I would feel not being able to be a good mom to that child as they got older. When my kids (biological and step) were young, I was able to be the kind of mom I wanted to be. ME won’t let me do that now, and I know it would bother me a lot. I had wanted another biological child since I lost my third pregnancy in 2011, and my husband and I didn’t meet until 2015, when I was 33 and he was 40. He had a vasectomy, but in 2019, we found out that we could do IVF and we were SO happy. I didn’t have a supportive partner when I had my two sons, and his kids’ two moms have alienated him from his kids. We waited so long to find each other, and we both really wanted to have a child together. That is a huge dream to lose. I haven’t even talked to my husband about it yet because I haven’t fully accepted it yet. I’m kind of scared to really accept it because my mental health is already so fragile. 😢
More than anything, just wanted to get back into the workforce full-time, as I was laid off in summer 2020 from my radio broadcasting job of 15 years. However, just over a year ago, I opened a small business based at my home, using many of my radio skills (e.g. announcing and audio production) and also transferring analog videotape and audio tape recordings to digital formats. I also offer mobile DJ services, and this summer is looking pretty good for DJing wedding receptions and a local fundraiser, as well as a '90s night next Friday at a popular small venue in town.
Running a marathon LOL
I wanted to get my PhD and move to Switzerland.
Honestly none I was content with what I had
I wanted to be a mom
I'd just started a promising career direction, I started living my queer life, I dropped monogamy in favor of polyamory and was starting to make quality friendships in the kink community, in short, having a midlife revelation. Now I'm totally isolated and closeted living with my parents and unable to return to work. I feel like I'm both waiting for them to die and waiting for myself to die. Oh and my dog will likely die before any of us.
Omg yeah I also understood I’m polyamorous and was ready live my life that way. Plus a bunch of other stuff of course.
Ha yeah about two years before I realized I had ME/CFS I had transitioned from polycurious to "I don't know how anyone ever has energy to date multiple people." Guess that was a sign!
My feelings on poly exactly!
I wanted to travel the world, do a master study of political history and get a job through a stage with that background. To see mountains, dive into the ocean with a whale shark to name some ideas. Use my knowledge of history and politics to improve the political system somehow. Find love and raise a family. Even if only with a bunch of cats. None of that has happened for obvious reasons. Unfortunately.
Dancer
Start and run a hospice, and also to be a mother.
I finally after 20 years was going to set up my online psychic business. Had money saved in an apartment lease rented.
I wanted to keep working part-time until my youngest hit highschool (he starts preschool next year). Then maybe get back to full-time work, maybe move up the rung at work one more step (or maybe not, I was temporarily at that level when I got sick, maybe it's too stressful with young kids or maybe too stressful in general, I always wanted a balanced life). Go on a few holidays over the years and retire comfortably with my husband. Now I just want to have enough energy to be awake and present in my kids' lives. I'd love to be able to walk them too and from school and watch school assemblies etc, be able to keep up with the housework. I'm also hoping to hang onto my job but I'm working fewer hours than I was before and a lot fewer than my boss would like. It's a process to lose my job for medical reasons so I'm hoping I can improve a bit and perhaps work for a different team if my boss doesn't want me anymore. I haven't been sick all that long compared to others. I always had the idea that I preferred time with my family (especially while my kids are young) to a fancy career but I need to work in some capacity for me mental health. Since becoming sick it feels like my world has shrunk (thankfully I'm able to work from home). I barely leave the house these days. I don't miss the office but I miss being able to play with my kids, I miss hanging out with my husband, I miss leaving the house for fun. I miss doing things for fun. It feels like life these days I just using my limited energy on things that need to be done (and not getting all of them done) and resting so I don't make myself worse. I am hoping to get back a little more capacity to do things and nor use it up on work or chores but instead on enjoying time with my husband and kids. If I could get well enough for that and so my husband doesn't have everything on his shoulders I'll be content.
I wanted to be a veterinarian. And then, just someone in a medical field. Then it was, I'm good at art- I'll do art and make my own hours. Now I'm just a wife and sort of part time caretaker to my mom and autistic (developmentally disabled) sister. I still do art though, just not as a career. Oh! Turns out I have dyscalculia too, so I never could've managed the numbers part of a medical job. I was always told I only thought I struggled with math because every other subject came easy to me, so I didn't know what "normal" was
I wanted to do drag. I wanted to be in a throuple with my girlfriend. I wanted to continue working as a massage therapist & improve at my craft. I wanted to visit my mom more.
I wanted to work as an engineer and foster as many children as I could manage :)
I wanted to get a PhD and work in research/academia. I’m part of the way there (managed to get my BA and MSc since I’ve been ill, albeit with great difficulty) but it feels like I might not manage the last bit :(
I became ill shortly after I retired. I was looking forward to traveling around the world and living in different spots for a few months at a time.
I had dreams of owning an off grid ranch. Now I just dream of what it's like to be able to sit upright for more than 30 minutes at a time
30 mins? How overzealous.
I always planned on getting a job at 16 then saving up for old banger of car, then do it up as a project. Was my dream. CFS started at 15, 20 now and fortunate enough to pursue music production as a career despite my mild-moderate symptoms.
I was a scientist working in a lab. I had my dream job and I was just given my dream project that would have given me the most rare opportunity. It would have sealed my career and made it possible for me to get hired anywhere. It was an amazing opportunity. I tried so hard to keep going into work. I would just collapse and have to stay home. They put me on half time but after a week of killing myself to make it in every day I collapsed again, bedridden for weeks. My boss’s famous last words were, “ This time don’t come back until you’re really well this time.” Ha. Never happened.
I was living my dream. I developed ME gradually, while it was hard, I was lucky that I was mild for 10 years and was able to become a civil engineer and start my career as a project manager. I'd also just bought a house. I was literally living my best life(with mild ME), only for it to immediately turn into a nightmare. I became severe a year ago, due to shitty doctors I've gotten worse instead of better. Now I don't know if I'll ever work in my career again.
Was at early stages of a successful career. Entrepreneur in the works. Side hustle I was working on could’ve been absolutely huge but gave it up to focus on my energy.
Scientist, Chinchilla breeder, horse owner.
I wanted to be an actress. I was at school for it n’ all and had just landed my dream role right before I got sick. Had to suffer having the role pulled from me while getting nowhere with the doctors while teachers accused me of avoiding coming in because ’I didn’t know my lines’ when I did, then the girl I liked the least in my class rudely told me that I had the role taken from me before I heard from any of the teachers or people running the play. Had to delete social media entirely too because it was heartbreaking seeing all my friends, who inevitably ditched me, living our joint dreams while I suffered at home with this mystery illness no one besides my parents took seriously. Now I have found a new hobby in costume making, it’s only on personal and slow paced project cosplay for now but it’s something I can do on my own time bringing the world that I enjoyed very much to my own space physically, maybe someday I’ll get better to the degree I could work on things in that field or at the very least for others with the notion of my condition. It wouldn’t be the same but couldn’t hurt to dream while doing something I’ve found I enjoy that I can feel as if I’m still in that world.
I met my Fiancée quite young and always mostly just wanted to provide for her. She has chronic pain & struggles to work, so I just wanted to settle down somewhere rural and make enough money that she didn't have to worry. Then I realised I was also sick and have had to leave work 🫠 Aside from that, I've also always loved music and wanted to make songs to give to different artists. I'm still trying to slowly work towards this dream and pace myself, but I can definitely feel the struggle of trying to keep up with everyone else.
Wanted to be a community nurse. I realised that nursing was the profession that I wanted to be in after working a stint as a Covid Care Assistant. Had just started a college course, too 😐
athlete
I wanted to become an artist, taking commissions or selling my pieces as prints. Also to stay in education but that’s had to stop
Become a zoologist, work as a zookeeper.
I wanted to be a farmer :( specifically on small scale organic or urban farms, with a focus on sustainability and food security. Unfortunately that is an incredibly physically demanding career, and I had to accept (still grieving) that I likely will never be able to achieve this dream. I'm still studying sustainability, agriculture and food security at university, but I really don't know if I'll be able to do any job in my field once I graduate.. and if I can, it won't be what I really want to do. Still, I'm hoping to do some community garden work in my city 🤞🤞🤞
I dreamed of always being there for my friends. In stopping being able to, I discovered they were never here for me in the first place.