I may need to give up my job due to disability
August 27, 2017 4:17 AM Subscribe
I have a long-term health problem which affects my ability to work. I am currently working part-time and may have to give up work altogether. How do I cope with this on a practical and emotional level?
I am in my early 30s. After university, I had a period of unemployment due to my health being poor where I qualified for disability benefits. My health improved and I found a full-time job, but I only worked there for about a year because my health then declined again. I had to give up that job and I had another period of unemployment, only this time I didn’t qualify for any benefits because I had got married and my husband’s income was too high.
I realised that full-time work is unrealistic for me, and I gave up on the prospect of having any sort of career, I just focused on being well enough to work part-time. Things eventually improved and I got a part-time job.
Now I have been working at my part-time job for a few years, and I am struggling. I’m going through a bad patch with my health, and I’ve had to take a lot of sick time from work. It’s a real possibility that I might need to give up my job and focus on my health. If I do reach that stage, it’s not clear whether I’ll be well enough to find another job in the future or not.
(I’m deliberately being vague about my precise medical issues because I don’t want people to get derailed discussing that and second guessing my ability to work.)
I am really struggling to deal with this. One big issue is that I hate the idea of not contributing financially and being so dependent on my husband. I feel like this even working part-time but at least at the moment I am bringing in some money. He makes enough to support us both, so we don’t need my salary, and he is very clear that he wants me to put my health first, but I guess it’s a matter of pride.
I also worry about how things would work day-to-day. When I was not working before I spent a lot of time in medical appointments and then a lot of time trying to keep up my work skills and remain employable and fighting to get back into work. If I reach the point where I know I have no future in employment, what do I do then? At the moment, my days off from work are largely spent either in medical appointments or sleeping or resting to try to recover the energy spent at work. My husband does all the cooking and housework because I don’t have the energy. If I was not working then I would hopefully have enough energy to do the basic household things, but I dread to think of a life that is just spent in basic survival mode.
I also struggle because my disability is an invisible one, so people don’t realise how bad my health is and they can be very judgemental. I don’t know how I’d cope explaining to people (coworkers, friends, extended family) that I was giving up work for health reasons when people don’t understand my health problems in the first place.
Finally, if I did leave my job but then my health got better, I worry that I’d not be able to find another job due to my poor work history. Both my previous jobs took a lot time to find, after I decided I was well enough to look for a job, it took ages to get one, due to my poor employment record. I’m not going to be very employable if I’ve repeatedly had to leave a job and have a long period of unemployment due to ill health.
If anyone has any first-hand experience of dealing with this sort of thing, I’d love to hear it, as well as any general advice?
I am in my early 30s. After university, I had a period of unemployment due to my health being poor where I qualified for disability benefits. My health improved and I found a full-time job, but I only worked there for about a year because my health then declined again. I had to give up that job and I had another period of unemployment, only this time I didn’t qualify for any benefits because I had got married and my husband’s income was too high.
I realised that full-time work is unrealistic for me, and I gave up on the prospect of having any sort of career, I just focused on being well enough to work part-time. Things eventually improved and I got a part-time job.
Now I have been working at my part-time job for a few years, and I am struggling. I’m going through a bad patch with my health, and I’ve had to take a lot of sick time from work. It’s a real possibility that I might need to give up my job and focus on my health. If I do reach that stage, it’s not clear whether I’ll be well enough to find another job in the future or not.
(I’m deliberately being vague about my precise medical issues because I don’t want people to get derailed discussing that and second guessing my ability to work.)
I am really struggling to deal with this. One big issue is that I hate the idea of not contributing financially and being so dependent on my husband. I feel like this even working part-time but at least at the moment I am bringing in some money. He makes enough to support us both, so we don’t need my salary, and he is very clear that he wants me to put my health first, but I guess it’s a matter of pride.
I also worry about how things would work day-to-day. When I was not working before I spent a lot of time in medical appointments and then a lot of time trying to keep up my work skills and remain employable and fighting to get back into work. If I reach the point where I know I have no future in employment, what do I do then? At the moment, my days off from work are largely spent either in medical appointments or sleeping or resting to try to recover the energy spent at work. My husband does all the cooking and housework because I don’t have the energy. If I was not working then I would hopefully have enough energy to do the basic household things, but I dread to think of a life that is just spent in basic survival mode.
I also struggle because my disability is an invisible one, so people don’t realise how bad my health is and they can be very judgemental. I don’t know how I’d cope explaining to people (coworkers, friends, extended family) that I was giving up work for health reasons when people don’t understand my health problems in the first place.
Finally, if I did leave my job but then my health got better, I worry that I’d not be able to find another job due to my poor work history. Both my previous jobs took a lot time to find, after I decided I was well enough to look for a job, it took ages to get one, due to my poor employment record. I’m not going to be very employable if I’ve repeatedly had to leave a job and have a long period of unemployment due to ill health.
If anyone has any first-hand experience of dealing with this sort of thing, I’d love to hear it, as well as any general advice?
Best answer: There's no easy answers. I'll leave marriage questions to married people, except to say that I'm sure you will find ways to contribute. And, if you can, try to think how you'd feel if your positions were reversed. I'm guessing you'd want him to look after himself and wouldn't mind being the sole earner.
As for what you do all day, well, I'm limited enough that a lot of the answer is Netflix and naps. But the real answer is, anything your illness will permit. If you quit working and have some more energy, you can help around the house, pursue hobbies, do volunteering...
Think of what you would do if you if you had all the time in the world, then scale it to whatever your illness will permit. If you can't think of anything, time to experiment.
I don't know if any of this is helpful. You're asking some big questions that don't have simple answers. It's probably always going to be hard. I have found that it does get a bit easier. PM me any time if you want to chat about this stuff.
posted by bizarrenacle at 6:18 AM on August 27, 2017 [1 favorite]
As for what you do all day, well, I'm limited enough that a lot of the answer is Netflix and naps. But the real answer is, anything your illness will permit. If you quit working and have some more energy, you can help around the house, pursue hobbies, do volunteering...
Think of what you would do if you if you had all the time in the world, then scale it to whatever your illness will permit. If you can't think of anything, time to experiment.
I don't know if any of this is helpful. You're asking some big questions that don't have simple answers. It's probably always going to be hard. I have found that it does get a bit easier. PM me any time if you want to chat about this stuff.
posted by bizarrenacle at 6:18 AM on August 27, 2017 [1 favorite]
I wonder if it would help your sense of purpose to find a volunteer doing-good project or some kind of craft/art/passion thing so you can feel like you are putting kindness and beauty into the world. Something that you can ramp up and down your involvement as your energy allows, of course.
posted by matildaben at 7:11 AM on August 27, 2017
posted by matildaben at 7:11 AM on August 27, 2017
My wife basically took the year off to deal with a slow-healing injury, and it's been great. She hasn't felt pressured to go back to work, so she really has been able to heal, and as she's gotten better she's taken over the housework and been making great strides on her creative project (which had also gotten stalled by her inability to sit at a computer for any length of time.) I'm delighted because a) she's happy and healthy and b) she does the dishes so I don't have to.
She may not go back to working full-time, for the foreseeable future or ever. This is fine. The economics work out for us, the housework needs to get done and she can and will do it, and my job is enough to cover our money and healthcare needs. And she will probably sell her novel in the next year or so and bring in at least a little money, and she still tutors a few hours a week (and may do a few more, or not, as she feels like it.)
Your pride is a tricky issue, but I take great comfort in remembering that capitalism isn't actually my religion and being a good worker and consumer is not my chief value, nor is it my wife's.
posted by restless_nomad at 8:15 AM on August 27, 2017 [9 favorites]
She may not go back to working full-time, for the foreseeable future or ever. This is fine. The economics work out for us, the housework needs to get done and she can and will do it, and my job is enough to cover our money and healthcare needs. And she will probably sell her novel in the next year or so and bring in at least a little money, and she still tutors a few hours a week (and may do a few more, or not, as she feels like it.)
Your pride is a tricky issue, but I take great comfort in remembering that capitalism isn't actually my religion and being a good worker and consumer is not my chief value, nor is it my wife's.
posted by restless_nomad at 8:15 AM on August 27, 2017 [9 favorites]
Best answer: If I were in your position (and it's possible that I will be eventually) I would focus on my creative passions even more than I do when working. I'm a writer, artist, and musician. When I'm doing these things I feel productive and good about myself even if they don't bring in any money. Other friends with similar histories have pursued (depending on ability) animal care, quilting, crafts such as knitting Dr. Who scarves, dollmaking, woodcarving, cooking and recipe invention, blogging, etc. Is there any aspect of your job that you enjoy enough to do on a voluntary basis? Some of the people making the most awesome contributions to the world aren't working a traditional job. And as with restless_nomad, capitalism and consumerism are not chief values of myself and my partner, nor of a lot of people. It sounds like your husband is on board and very supportive so you need not feel like you're burdening him.
I know what you're saying about how appointments and self-care take a lot of time. I've often said that having a mental illness (I have five diagnoses personally) is a full-time job. It's only when I've been unhealthily stuffing my emotions that I've been able to hold down a typical job schedule. I'm working toward a better income, but it may be composed of freelance work-at-home gigs and/or something easyish and part-time. There is no shame in that. The Protestant work ethic is based on shaming and blaming people and it has made our culture extremely toxic. The expectations it engenders are just as unrealistic as the pressures on women to be thin and perfect-looking. Hardly anyone can live up to them without either having kickass executive function, perfect health, or a lot of luck.
posted by Beethoven's Sith at 8:51 AM on August 27, 2017 [1 favorite]
I know what you're saying about how appointments and self-care take a lot of time. I've often said that having a mental illness (I have five diagnoses personally) is a full-time job. It's only when I've been unhealthily stuffing my emotions that I've been able to hold down a typical job schedule. I'm working toward a better income, but it may be composed of freelance work-at-home gigs and/or something easyish and part-time. There is no shame in that. The Protestant work ethic is based on shaming and blaming people and it has made our culture extremely toxic. The expectations it engenders are just as unrealistic as the pressures on women to be thin and perfect-looking. Hardly anyone can live up to them without either having kickass executive function, perfect health, or a lot of luck.
posted by Beethoven's Sith at 8:51 AM on August 27, 2017 [1 favorite]
I have an irregular work pattern. When I'm not working I keep up my feeling of contributing to our household. I work at saving us money, money saved is as good as money earned. So money we would blow on eating out because we were both busy & save us by making homecooked meals. I meal plan with sales catalogs & coupons & save us even more. I am in charge of our household budget, so have worked hard to save us money there. I do small DIY projects around the house instead of paying a handyman. I garden & mow so my husband can have time off on weekends.
Now I understand with a disability this might not all be possible, but there are lots of ways you can work around the house to save money that would fit in & around how you feel. You can still contribute to the household without bringing in money. Instead of trading your labor for money you are now applying that labor more directly to both of your lives.
In among all that find a project of your own. In my case it was a severe decluttering of our household (which bought in some money selling off unwanted items on ebay & craigslist). I'm now working on decorating our house on a strict budget, but your projects can be whatever you like.
Don't forget to set aside time & energy for projects/creative time etc just for yourself too.
posted by wwax at 9:22 AM on August 27, 2017
Now I understand with a disability this might not all be possible, but there are lots of ways you can work around the house to save money that would fit in & around how you feel. You can still contribute to the household without bringing in money. Instead of trading your labor for money you are now applying that labor more directly to both of your lives.
In among all that find a project of your own. In my case it was a severe decluttering of our household (which bought in some money selling off unwanted items on ebay & craigslist). I'm now working on decorating our house on a strict budget, but your projects can be whatever you like.
Don't forget to set aside time & energy for projects/creative time etc just for yourself too.
posted by wwax at 9:22 AM on August 27, 2017
Best answer: Hello life twin! (FWIW I'm 27, F. Started getting sick in college and left my job 2.5 years ago after being sick for the whole time thinking I would just find out what it was and treat it and be working again. HA!)
This will be long. So I will start with TLDR: Been there. I don't have all the answers. Some of this may not work for you.
Most importantly I am here if you want a illness buddy. I get it. I heavily use Instagram and have connected with many others on there to chat with. So sincerely, feel free to message me here - or instagram (in bio) and I'm happy to chat.
Doctors:
I mention this first because it's most important. Not that I don't think you already have good doctors but make sure they are listening to you, believing you, doing their best to help, and sending you to specialist if they don't know an answer rather than sending you away. I've had so much sexist crap dealing with doctors. It's been life changing to find the ones that care.
Therapist:
Get one if you don't have one. See if there's someone who will do phone sessions if that's easier. Find someone who understands illness. Illness is HARD. It's stressful. I get severe anxiety. I've had bouts of depression from it. Get someone who will listen. My therapist also helped me sort of figure out how to manage appointments and family and whatever.
Relationship:
Also, this is hard on relationships. Make sure you do what you need to do to check in with each other and communicate your needs to each other. Make sure beyond dealing with the illness you're also having fun with each other somehow. For us, it's TV shows we watch together, movies, and now learning Spanish.
Financial contribution:
I too don't "need" to work to have all the bills paid. But we would be much more comfortable if I was working. Let me tell you. This part is HARD! Ways I try to think about it:
-I am contributing in other ways
-I am doing the best I can
-If roles were reversed I wouldn't be mad at my husband if he were doing his best
-Up until recently (though due to sexism) one spouse often didn't work
-It's my "job" to take care of myself.
Now, some of this "contribution" crap can be helped by the Day to Day stuff listed below.
But there's no easy answer. As I've been slightly able to contribute in other ways, the better I've felt about it. We are also looking into possibilities of disability payments and whatnot.
Day to Day:
-Cleaning: Oh boy this one sucks. So, you have to figure out - on average - how much house crap you may be able to do. You may find that you can do more than you think since you're not working, or you may not.
House crap isn't as fun as fun crap so I find it harder to do. I've also been a slightly messy person though I would love a spotless house.
Some tips are:
-General "duh" cleaning stuff. Start with a clean place. Make sure everything has a place where it "lives." CLEAN AS YOU GO! Have 1 second? Put away the dish. A single dish even. It's better than nothing. I also tend to clean while I'm doing other things like cooking. So in the 10 mins my tofu is on the stove I'm putting away things. It doesn't feel like "cleaning" if I'm doing it while I'm waiting.
-Save hard physical activity for your spouse.
-De clutter as much as possible. Clothes you won't wear? Toss em. Dishes you don't use? Out they go.
MAGIC CLEANING TIPS:
-Use plastic microwave splash cover. I rarely have to do anything more than brush crumbs out of my microwave.
-Run the dishwasher when one section is full (top rack OR bottom rack OR silverware). Don't let it all pile up just to "fill" other parts of it.
-Use disposable stuff. (This can be a tricky thing for some people. And I want to do my part for the environment. But I have to put my health first. I use disposable bowls for just about everything to keep me sane and able to eat off clean dishes - and then I'm running the dishwasher less.)
Day to day life fulfillment:
Lots of TV or reading or podcasts or whatever.
I think I would die with TV and movies. So many people are like "Uhm, TV is stupid." Nah. TV and movies are amazing. I've watched so many great shows and movies. It can be really fun!!
TV, Reading, and podcasts are also engaging. They make you feel like you have company when you're alone.
Get a hobby.
It sounds dumb as shit but it works. I do art. I opened my own Etsy and sell art prints. It makes a few dollars here and there but it's something to do that I can use my work skill for (marketing, art, sales, social media.)
Also, as I've started to feel slightly better, I have increased my goals. I switched from doing digital sales to mailing physical prints. I'm doing a drawing a day for practice and some other things like learning Spanish with my husband.
It also gives me something to talk with people about. If I don't want to dive in to my health situation then talking about my Etsy business and handing them my card is something that I "do." I told a neighbor the other day I was an "artist" and didn't have to be like "Oh I don't work right now... blah blah..." (I'm probably more open about it than you'd like to be - totally fine - but sometimes I don't WANT to talk about it or have it be the only thing someone knows about me).
It's fine if you can't do something that intense. Color in some coloring books. Journal. Just start doing something that interests you and see if you can make something out of it that you can sort of do regularly. For a while I put together puzzles and made myself shrinky dink jewelry.
Connect online:
It sounds dumb as shit but doing Instagram photos, outfits, makeup, art, etc has helped me feel human. I rarely leave the house but having time to put on makeup and feel pretty makes me feel like a person. It's also allowed me to connect with others dealing with similar things and form some great connections with people!
It's also kept me accountable to do things regularly. Such as my drawing a day or actually getting dressed most days - even just for photos as it often is.
We often get sort of forgotten dealing with illness so social media can be a place to connect. I've also had people message me to talk about illness or thank me for talking about it who don't talk about it publicly themselves. So that's fine! You don't have to share anything you don't want to publicly.
Explaining to others:
This is FULLY up to you how you want to talk about it. If you don't want to talk about it DON'T! If it's family or something, change the subject. "Hey aunt Mary. I appreciate you trying to help but I don't want to talk about it. I'm working with my doctors on it." etc.
The worst thing is when people try to cure you. I'm all for suggestions of things when it's worked for other people Example: "Gluten makes me really sick. Thought I'd mention it." is fine, versus "You SHOULD do yoga. It will totally cure you." Nah, I can't do yoga and it' ain't guna cure me.
Here's the thing, the world has this shitty idea that if you can't SEE a disability or illness then it's not real. When in fact, so so so many illnesses and disabilities ARE invisible. Can you tell if someone has cancer? Not unless they're doing treatments that cause hair loss. Can you tell if someone has a stomach ache? Not unless they tell you.
Honestly, I don't talk about my illness unless it's with people I trust that they will understand or at least attempt to understand.
I barely mentioned anything to old coworkers. Everyone pretty much got a different answer when I left my job and I felt really bombarded. So figure out what you'd like to say. You can half-lie and say "taking time to work on personal projects" or something too. But you don't OWE anyone an answer or conversation about it. It's your private information.
There's a really bad idea about guilt or embarrassment being sick. Like it's somehow our fault. You're not alone if you feel this way. Everyone who is sick has mentioned they have felt this way. But it's a feeling I'm trying to break. So I talk about it pretty openly. But I absolutely don't think it's anyone's right to just know that about you.
So, if you don't want to, don't even tell your extended family why you're leaving the job.
Or if you want, like me, I just bombard them with info and details if they ask or get nosey. I'm not shy about talking about it. I can link them to information about my illness. I have a list of tests, surgeries, symptoms, etc. It's pretty clear I'm actually sick if they want to see my surgical videos or watch my legs turn purple when I stand up or see my stomach bloat up after eating or see how tired I get just from doing basic crap.
Basically, I don't have time for people who don't believe me or don't care. So why should I put time into babying them about their "understanding" my illness? Nah.
Future work:
Here's where I leave you. I have no clue. Honestly, I sorta put that on the backburner.
I'm doing things for my resume. I have my Etsy shop, Instagram, etc. But I'm nowhere near being able to work a traditional (or semi traditional) job anytime soon. So I have to focus on NOW. That's the rub with illness. We can't plan for the future. It can shift and change.
So, I hope someone has a better answer as far as getting back into the workforce, and it's something I know I'll be asking about if or when I get there.
But I DO know that I want to work somewhere that is actually understanding and flexible. That they make accommodations for me NOT because they're required to be law but that they respect me as a person. I want an employer who understands that while my body may be unreliable, I am not unreliable. So I give myself plenty of time to complete projects to work around my body.
Right now though, I don't think my mental or physical energy is best spent worrying about something that isn't going to happen. It's not like I'm ignoring it. But I literally can't do anything about it right now. This is my life situation. Would it be "better" for my resume to keep a job? Yeah, but I literally can't so worrying about it won't make any difference.
Like I said, long. But I've been through all of it. It sucks. I won't lie.
Treat yourself kindly:
Lastly, don't let what you "should have done" and what you "got done" get you upset. I would get (and still do get) SO upset at myself for not completing a goal or having to leave a store early or whatever.
I'm learning, slowly, to congratulate myself just for getting through the day. Anything beyond that is bonus. I still get mad at the world and at my body that I HAVE to pat myself on the back for doing the dishes or going to Target or whatever, but it's still something I did.
But again, if you want to reach out, I'm all ears.
posted by Crystalinne at 1:14 PM on August 27, 2017 [3 favorites]
This will be long. So I will start with TLDR: Been there. I don't have all the answers. Some of this may not work for you.
Most importantly I am here if you want a illness buddy. I get it. I heavily use Instagram and have connected with many others on there to chat with. So sincerely, feel free to message me here - or instagram (in bio) and I'm happy to chat.
Doctors:
I mention this first because it's most important. Not that I don't think you already have good doctors but make sure they are listening to you, believing you, doing their best to help, and sending you to specialist if they don't know an answer rather than sending you away. I've had so much sexist crap dealing with doctors. It's been life changing to find the ones that care.
Therapist:
Get one if you don't have one. See if there's someone who will do phone sessions if that's easier. Find someone who understands illness. Illness is HARD. It's stressful. I get severe anxiety. I've had bouts of depression from it. Get someone who will listen. My therapist also helped me sort of figure out how to manage appointments and family and whatever.
Relationship:
Also, this is hard on relationships. Make sure you do what you need to do to check in with each other and communicate your needs to each other. Make sure beyond dealing with the illness you're also having fun with each other somehow. For us, it's TV shows we watch together, movies, and now learning Spanish.
Financial contribution:
I too don't "need" to work to have all the bills paid. But we would be much more comfortable if I was working. Let me tell you. This part is HARD! Ways I try to think about it:
-I am contributing in other ways
-I am doing the best I can
-If roles were reversed I wouldn't be mad at my husband if he were doing his best
-Up until recently (though due to sexism) one spouse often didn't work
-It's my "job" to take care of myself.
Now, some of this "contribution" crap can be helped by the Day to Day stuff listed below.
But there's no easy answer. As I've been slightly able to contribute in other ways, the better I've felt about it. We are also looking into possibilities of disability payments and whatnot.
Day to Day:
-Cleaning: Oh boy this one sucks. So, you have to figure out - on average - how much house crap you may be able to do. You may find that you can do more than you think since you're not working, or you may not.
House crap isn't as fun as fun crap so I find it harder to do. I've also been a slightly messy person though I would love a spotless house.
Some tips are:
-General "duh" cleaning stuff. Start with a clean place. Make sure everything has a place where it "lives." CLEAN AS YOU GO! Have 1 second? Put away the dish. A single dish even. It's better than nothing. I also tend to clean while I'm doing other things like cooking. So in the 10 mins my tofu is on the stove I'm putting away things. It doesn't feel like "cleaning" if I'm doing it while I'm waiting.
-Save hard physical activity for your spouse.
-De clutter as much as possible. Clothes you won't wear? Toss em. Dishes you don't use? Out they go.
MAGIC CLEANING TIPS:
-Use plastic microwave splash cover. I rarely have to do anything more than brush crumbs out of my microwave.
-Run the dishwasher when one section is full (top rack OR bottom rack OR silverware). Don't let it all pile up just to "fill" other parts of it.
-Use disposable stuff. (This can be a tricky thing for some people. And I want to do my part for the environment. But I have to put my health first. I use disposable bowls for just about everything to keep me sane and able to eat off clean dishes - and then I'm running the dishwasher less.)
Day to day life fulfillment:
Lots of TV or reading or podcasts or whatever.
I think I would die with TV and movies. So many people are like "Uhm, TV is stupid." Nah. TV and movies are amazing. I've watched so many great shows and movies. It can be really fun!!
TV, Reading, and podcasts are also engaging. They make you feel like you have company when you're alone.
Get a hobby.
It sounds dumb as shit but it works. I do art. I opened my own Etsy and sell art prints. It makes a few dollars here and there but it's something to do that I can use my work skill for (marketing, art, sales, social media.)
Also, as I've started to feel slightly better, I have increased my goals. I switched from doing digital sales to mailing physical prints. I'm doing a drawing a day for practice and some other things like learning Spanish with my husband.
It also gives me something to talk with people about. If I don't want to dive in to my health situation then talking about my Etsy business and handing them my card is something that I "do." I told a neighbor the other day I was an "artist" and didn't have to be like "Oh I don't work right now... blah blah..." (I'm probably more open about it than you'd like to be - totally fine - but sometimes I don't WANT to talk about it or have it be the only thing someone knows about me).
It's fine if you can't do something that intense. Color in some coloring books. Journal. Just start doing something that interests you and see if you can make something out of it that you can sort of do regularly. For a while I put together puzzles and made myself shrinky dink jewelry.
Connect online:
It sounds dumb as shit but doing Instagram photos, outfits, makeup, art, etc has helped me feel human. I rarely leave the house but having time to put on makeup and feel pretty makes me feel like a person. It's also allowed me to connect with others dealing with similar things and form some great connections with people!
It's also kept me accountable to do things regularly. Such as my drawing a day or actually getting dressed most days - even just for photos as it often is.
We often get sort of forgotten dealing with illness so social media can be a place to connect. I've also had people message me to talk about illness or thank me for talking about it who don't talk about it publicly themselves. So that's fine! You don't have to share anything you don't want to publicly.
Explaining to others:
This is FULLY up to you how you want to talk about it. If you don't want to talk about it DON'T! If it's family or something, change the subject. "Hey aunt Mary. I appreciate you trying to help but I don't want to talk about it. I'm working with my doctors on it." etc.
The worst thing is when people try to cure you. I'm all for suggestions of things when it's worked for other people Example: "Gluten makes me really sick. Thought I'd mention it." is fine, versus "You SHOULD do yoga. It will totally cure you." Nah, I can't do yoga and it' ain't guna cure me.
Here's the thing, the world has this shitty idea that if you can't SEE a disability or illness then it's not real. When in fact, so so so many illnesses and disabilities ARE invisible. Can you tell if someone has cancer? Not unless they're doing treatments that cause hair loss. Can you tell if someone has a stomach ache? Not unless they tell you.
Honestly, I don't talk about my illness unless it's with people I trust that they will understand or at least attempt to understand.
I barely mentioned anything to old coworkers. Everyone pretty much got a different answer when I left my job and I felt really bombarded. So figure out what you'd like to say. You can half-lie and say "taking time to work on personal projects" or something too. But you don't OWE anyone an answer or conversation about it. It's your private information.
There's a really bad idea about guilt or embarrassment being sick. Like it's somehow our fault. You're not alone if you feel this way. Everyone who is sick has mentioned they have felt this way. But it's a feeling I'm trying to break. So I talk about it pretty openly. But I absolutely don't think it's anyone's right to just know that about you.
So, if you don't want to, don't even tell your extended family why you're leaving the job.
Or if you want, like me, I just bombard them with info and details if they ask or get nosey. I'm not shy about talking about it. I can link them to information about my illness. I have a list of tests, surgeries, symptoms, etc. It's pretty clear I'm actually sick if they want to see my surgical videos or watch my legs turn purple when I stand up or see my stomach bloat up after eating or see how tired I get just from doing basic crap.
Basically, I don't have time for people who don't believe me or don't care. So why should I put time into babying them about their "understanding" my illness? Nah.
Future work:
Here's where I leave you. I have no clue. Honestly, I sorta put that on the backburner.
I'm doing things for my resume. I have my Etsy shop, Instagram, etc. But I'm nowhere near being able to work a traditional (or semi traditional) job anytime soon. So I have to focus on NOW. That's the rub with illness. We can't plan for the future. It can shift and change.
So, I hope someone has a better answer as far as getting back into the workforce, and it's something I know I'll be asking about if or when I get there.
But I DO know that I want to work somewhere that is actually understanding and flexible. That they make accommodations for me NOT because they're required to be law but that they respect me as a person. I want an employer who understands that while my body may be unreliable, I am not unreliable. So I give myself plenty of time to complete projects to work around my body.
Right now though, I don't think my mental or physical energy is best spent worrying about something that isn't going to happen. It's not like I'm ignoring it. But I literally can't do anything about it right now. This is my life situation. Would it be "better" for my resume to keep a job? Yeah, but I literally can't so worrying about it won't make any difference.
Like I said, long. But I've been through all of it. It sucks. I won't lie.
Treat yourself kindly:
Lastly, don't let what you "should have done" and what you "got done" get you upset. I would get (and still do get) SO upset at myself for not completing a goal or having to leave a store early or whatever.
I'm learning, slowly, to congratulate myself just for getting through the day. Anything beyond that is bonus. I still get mad at the world and at my body that I HAVE to pat myself on the back for doing the dishes or going to Target or whatever, but it's still something I did.
But again, if you want to reach out, I'm all ears.
posted by Crystalinne at 1:14 PM on August 27, 2017 [3 favorites]
Best answer: I am similar to you. I have had migraine since high school; it has gotten gradually worse until it turned into chronic migraine. I've had to quit multiple jobs and gave up working completely about 18 months ago and iam in the process of applying for disability.
For me, I'm unable to leave the house most days, so I balance being productive at home, enjoying myself, and staying well. The fact is, I'm home because I'm disabled and not because I've chosen to be a homemaker; while I do jobs around the house daily, I make sure I'm not pushing myself to do more than I "should" health-wise. I read a lot, as that's always been a love of mine--e-books from the library are the best for impulse browsing. I'm not a big craft or project person; I have a lot of nerdy interests I satisfy through reading and the Internet (playing casual games, religion, history of marginalized groups, languages, etc.), so I spend time satisfying my nerdery every day.
I definitely struggle with being financially dependent on my spouse. For this reason, I have a credit card in my name only and I'm seeking disability benefits. I am happy in my relationship and have no thoughts of divorce, but I want to know I *can* leave if I should ever wish to. I've also started to notice my energy rebound in the last few months--if you stop working, you may find it's possible to do a little intermittent work after time passes to make a little income of your own. I would definitely have a conversation about this with your spouse--this has been the hardest emotional piece for me.
posted by epj at 1:30 PM on August 27, 2017 [1 favorite]
For me, I'm unable to leave the house most days, so I balance being productive at home, enjoying myself, and staying well. The fact is, I'm home because I'm disabled and not because I've chosen to be a homemaker; while I do jobs around the house daily, I make sure I'm not pushing myself to do more than I "should" health-wise. I read a lot, as that's always been a love of mine--e-books from the library are the best for impulse browsing. I'm not a big craft or project person; I have a lot of nerdy interests I satisfy through reading and the Internet (playing casual games, religion, history of marginalized groups, languages, etc.), so I spend time satisfying my nerdery every day.
I definitely struggle with being financially dependent on my spouse. For this reason, I have a credit card in my name only and I'm seeking disability benefits. I am happy in my relationship and have no thoughts of divorce, but I want to know I *can* leave if I should ever wish to. I've also started to notice my energy rebound in the last few months--if you stop working, you may find it's possible to do a little intermittent work after time passes to make a little income of your own. I would definitely have a conversation about this with your spouse--this has been the hardest emotional piece for me.
posted by epj at 1:30 PM on August 27, 2017 [1 favorite]
Best answer: I have been disabled for a long time with Bipolar 1, for many years of that time I was an unpaid caregiver (more emotional support than practical support) for my ex-fiancee. I thought when that relationship ended I would focus 100% on taking steps to get back into work, but my illness turned out to be more significant than I thought, and recently I've been through a bit of grieving that I might not ever have anything approaching a career again. It has helped me going through counselling, I imagine even free options like 7 cups of tea might help to discuss some of these issues, or even journaling would do. If there are sliding scale options then counselling might be something to consider to process difficult feelings.
I have also recently applied for a couple of very modest volunteering opportunities - partly these were ones I thought my remaining skills might be a good match, but less altruistically I thought doing them would give me an answer to the question "And what do you do?" which I always dread when meeting new people.
At the moment I like connecting with others online through a social anxiety forum where I do my best to encourage others and also a language learning app (HelloTalk) where I try to encourage people learning English. Helping people with English through conversation practice feels very rewarding to me. I am also actively involved in a couple of Meetup groups especially a mental health support one, where I both give and get emotional support. If there was no group useful to me I might consider starting one, but my city is quite well covered. So actually the challenge for me at the moment isn't my social life, where I do quite well, but filling the daytimes when most people are at work and I am at home in my messy flat. I really want to have a tidier place, not a minimalist one as I like having lots of books and DVD's, but I like knowing where to find things and having a nice living environment. I am not a crafting type person but I love my movies either at home or on the big screen, I love music whether live or at home, I love reading, I love my regular tea breaks. I can do more and I hope to more, but those are the things which comfort me and keep me well. Staying well is your main job, to the best you can do it. You might find something useful in the aspects of wellbeing model :-
https://www.mind.org.uk/workplace/mental-health-at-work/taking-care-of-yourself/five-ways-to-wellbeing/
This might be controversial suggestion in a work ethic society, but the Ernie Zelinski book "The Joy Of Not Working" was actually a genuine and serious book which wasn't just about slacking and goofing off but had many good suggestions for building structure in purpose when work doesn't provide those any more. It is very easy to just "kill time" when not working and days can go by with little to show for them so a book like that can be really helpful in deciding what you actually want to do with this phase of your life.
posted by AuroraSky at 11:18 PM on August 27, 2017
I have also recently applied for a couple of very modest volunteering opportunities - partly these were ones I thought my remaining skills might be a good match, but less altruistically I thought doing them would give me an answer to the question "And what do you do?" which I always dread when meeting new people.
At the moment I like connecting with others online through a social anxiety forum where I do my best to encourage others and also a language learning app (HelloTalk) where I try to encourage people learning English. Helping people with English through conversation practice feels very rewarding to me. I am also actively involved in a couple of Meetup groups especially a mental health support one, where I both give and get emotional support. If there was no group useful to me I might consider starting one, but my city is quite well covered. So actually the challenge for me at the moment isn't my social life, where I do quite well, but filling the daytimes when most people are at work and I am at home in my messy flat. I really want to have a tidier place, not a minimalist one as I like having lots of books and DVD's, but I like knowing where to find things and having a nice living environment. I am not a crafting type person but I love my movies either at home or on the big screen, I love music whether live or at home, I love reading, I love my regular tea breaks. I can do more and I hope to more, but those are the things which comfort me and keep me well. Staying well is your main job, to the best you can do it. You might find something useful in the aspects of wellbeing model :-
https://www.mind.org.uk/workplace/mental-health-at-work/taking-care-of-yourself/five-ways-to-wellbeing/
This might be controversial suggestion in a work ethic society, but the Ernie Zelinski book "The Joy Of Not Working" was actually a genuine and serious book which wasn't just about slacking and goofing off but had many good suggestions for building structure in purpose when work doesn't provide those any more. It is very easy to just "kill time" when not working and days can go by with little to show for them so a book like that can be really helpful in deciding what you actually want to do with this phase of your life.
posted by AuroraSky at 11:18 PM on August 27, 2017
"My husband does all the cooking and housework because I don’t have the energy. If I was not working then I would hopefully have enough energy to do the basic household things, but I dread to think of a life that is just spent in basic survival mode."
But making nice meals isn't basic survival mode, it's an amazing contribution and he'll really enjoy it. Problem is, in our society making a gorgeous dinner is seen as on a par with shoving a tv dinner in the microwave, and historically, women did waste their lives polishing their stone doorsteps for hours every week. But if you think of your childhood, you will remember the meals your mother cooked you so vividly. Plus, if you're ever going to have children, and i don't think you should put it off, you have to have love and happiness however you are in the world, you're going to end up being a homemaker anyway.
The real problems are, 1) all this hangs on your marriage lasting forever, which is obviously nowadays seen as a silly way to plan things, and 2) it won't help you at all back in applying for jobs. So i'm not answering your question. But it's seriously lush and luxurious to have tasty meals and spare time and you will be able to spend more of his not-working time doing meaningful fun things together (in theory). I mean, it's partly just out social ideas you're struggling under, but underneath you will find other opinions about the same thing that you have from experience that are more positive.
Also, by 'bare survival mode' i guess you mean 'meaningless', like there's no reason or motivation, you want something beyond just being locked in the house. It's true, you have to get out, and you have to have reasons for living.
posted by maiamaia at 2:35 PM on August 28, 2017
But making nice meals isn't basic survival mode, it's an amazing contribution and he'll really enjoy it. Problem is, in our society making a gorgeous dinner is seen as on a par with shoving a tv dinner in the microwave, and historically, women did waste their lives polishing their stone doorsteps for hours every week. But if you think of your childhood, you will remember the meals your mother cooked you so vividly. Plus, if you're ever going to have children, and i don't think you should put it off, you have to have love and happiness however you are in the world, you're going to end up being a homemaker anyway.
The real problems are, 1) all this hangs on your marriage lasting forever, which is obviously nowadays seen as a silly way to plan things, and 2) it won't help you at all back in applying for jobs. So i'm not answering your question. But it's seriously lush and luxurious to have tasty meals and spare time and you will be able to spend more of his not-working time doing meaningful fun things together (in theory). I mean, it's partly just out social ideas you're struggling under, but underneath you will find other opinions about the same thing that you have from experience that are more positive.
Also, by 'bare survival mode' i guess you mean 'meaningless', like there's no reason or motivation, you want something beyond just being locked in the house. It's true, you have to get out, and you have to have reasons for living.
posted by maiamaia at 2:35 PM on August 28, 2017
nb in terms of food, you can grow a lot, cheaply, and do a lot, easily, which makes food ace but isn't big effort just attention, eg i like sprouting nuts and seeds (just have three on the go and rinse in water once a day... super easy and simple), and growing herbs eg you can grow ones from all over the world, you basically can stir them into soil and just 'cut and come again', and there are lots of plants like radishes you can do that way, 'cut and come again salad' and stuff, so you can make the most healthy food for your husband and he'll feel a lot more alive and healthy, yet won't do it for himself while working; you can contribute in lots of ways like this, it's really nice to experience. I live with my mother who cooks for me, and believe me, it ain't 'bare survival'
posted by maiamaia at 2:41 PM on August 28, 2017
posted by maiamaia at 2:41 PM on August 28, 2017
This thread is closed to new comments.
Also, I've had to let go of having my personal identity, self esteem, or self worth tied to the job I didn't have. I've come to realize that many people are underemployed and not utilizing their full talents. So relatively few people find self-actualization through their employment.
If there is any silver lining to what you're going through, I would say you're lucky in a sense that you have the option of being a housewife which is a perfectly acceptable social role in society. You can hide behind that as the reason you're not working. Not to play who's life is worse, but the same option is not given to younger men like myself and I'm willing to bet the stigma against men is much worse. So, as much as I might sound a bit bitter about my own circumstances in this paragraph, I still try to practice having gratitude for what I do have in my daily life. I understand that there will always be people who have it better and people who have it worse than I do.
posted by Gosha_Dog at 6:09 AM on August 27, 2017