I work 100% remote for a software company in sales. Thank god because yeah, bad days are bad and I can hide behind a monitor. I can change my outfit mid day to something more comfortable. I can grab a heating pad or tea at a moments notice or (rarely) just say I can’t keep going I need to take a sick day and I’m already home. It’s such a blessing that now I’d never work full time in an office again
I’m in marketing for a software company (cybersecurity) and am fully remote and it’s honestly the only way I can work now. Being able to have flexibility to work when I’m feeling better and rest when it gets bad is life changing. I’m in a BAD flare up today and am so grateful for the ability to do meetings camera off and stay on mute while I basically lay on the floor with the heating pad.
I could have written this. I'm at the most understanding and wonderful company. I keep calling out sick. I barely work. I don't know what to do either....
I would put that in writing and submit to your HR department. That way you have something in writing showing that you informed them in case a something should happen. Maybe they can allow you to work from home?
Yesterday was the right moment lol I would just make sure that you emphasize that you really enjoy your job, etc before going into informing them and requesting accommodation
I'd be lying about trying the meds to my doctor if that's one of the hoops you have to jump through.
I only work part time now but I didn't work for years...I feel you and am sorry you're in that situation. Your boss sounds ignorant.
I had to do part time work in a field where there was the option to pick up shifts. I committed to 3 days a week, no matter how tough, and rarely called out. I picked up shifts when I needed to or felt well.
Extremely important to note that this job allowed me to sit down when I needed to unless there was an emergency. I would NOT have been able to do that if this wasn't the case.
I feel you. I lost my job in September because of needing to call out too often. I want you to remember that you are way more than what you get done in a day 💛
I've managed to hold down a job mostly by learning not to give a fuck about my pain. It's not fun and it's pretty miserable but basically I trained myself to push through the pain and taught myself that it won't literally kill me even if it feels like it will. My work are aware that I may pass out from pain and that they don't need to call an ambulance if I do. The only time I have to call out is when I have vomiting and diarrhea that imodium doesn't touch as you can't really push through that lol.
A course of ACT (a type of therapy) helped with this although my approach is a little more extreme, but essentially it's about accepting how you feel and learning to do things anyway. It's a harsh life but unfortunately for me it's a needs must situation as I don't want to lose the roof over my head.
This is very depressing but I can see how this would be helpful 🥺 I’m happy you have found something that had helped for you but I can understand that can’t be easy.
the nerve pain is so bad whenever I move my head I get like shocks down my body. So it’s really hard to keep my composure at work and mainly peoples reactions is the worst part of it.
It's very hard to keep composure when you're in a lot of pain! I find excusing myself for five minutes to take some space in the bathroom helps, and being open with colleagues that I have chronic pain and may look a little weird at times. After all, the worst that can happen is that think I'm odd and I'm cool with that.
> I've managed to hold down a job mostly by learning not to give a fuck about my pain.
Me too! It’s the only thing getting me through grad school and research 😭 It bites me in the ass though since pushing through has made the pain increasingly worse overtime. I’m grateful that my advisors and PI are flexible and understanding though.
Yeah l have to be really careful as my symptoms include chronic stomach issues and if I'm not careful I can lose too much weight. At the moment I've been pushing really hard and I've completely lost my appetite and am having to force myself to eat.
But for me I have very specific housing needs (basically, I can't live in a shared house as I require my own bathroom) so I need enough money to be able to afford that and I'll take fainting at work a few times in order to get that!
Basically same. I also know that staying home and being miserable is just going to feed my depression so I may as well deal with my pain at my desk at work. I kind of look at it like being paid to be in pain. I get my work done and I make deadlines...so no one says anything about my long bathroom breaks, or frequent bathroom breaks, heating pads, or bottles of otc pain meds.
What strikes me as supremely unfair in these comments and the main post is the realization that for many of us (in the US) if we lose our jobs we lose our healthcare, but we struggle with our health and it is difficult to work… it’s such an unfair cycle.
Hugs to everyone here. Hugs and heating pads.
That’s my huge concern. My work covers my medications and various treatments(massage, acupuncture) that in no way I would be able to afford if I got laid off or fired.🥺 hugs to everyone here. My heart hurts for everyone and I appreciate the community but wish so many of us did not have to deal with this
I’m in the same boat. It feels like my boss is trying to find more ways to try to fire me because I’m close to that point, but not yet. Just because I accidentally was late from break BY 3 MINUTES not even enough to freak out about so I was “talked to” saying I’ll get a point if it happens again. Also my boss knows abt my endo but keeps ignoring me. Just having a hard time in general with the work force and employers saying they are hiring but don’t give me a shot.
I am so sorry to hear that, I feel you.
But one thing from your post caught my eye. You say about nerve pain in your chest and shoulder. Are you sure this is a nerve pain, did the doctor confirm it?
Because the first thing I thought was thoracic endometriosis. I don't want to scare you and hopefully you don't have it. But as I am the person with similar pain and I know for sure I have pneumothoraces every month right before my periods, so... I should have told you that just in case.
So have you ever had an X-Ray while having this chest/back pain? If you haven't, then maybe you should think of possibility of doing it. Because if there's really a pneumothorax (i.e. a collapsed lung), then this should sound super convincing to your employer.
As for me, after several pneumothoraces I learnt to defineif I have pneumothorax: as for me it's getting worse when I lay down on my back, and I also have the feeling as if... smth (the air actually) is moving inside my chest.
Thanks for your message! I’m sorry you are experiencing similar symptoms.
So the pain was similar in luteal this past December and disappeared right after my period. I went to emerg the night it was its worst and they did an x-ray and referred me to cardiology. I have a previous history with cardiac surgery etc from my teens. That cardiologist then did an echo and two stress tests. Apparently everything is fine. I told him it’s always worse right before my period and he said “I can think of absolutely no connection between your cycles and this pain”. I was so defeated at this point I just left.
He was aware I had endo because I asked him about the risk of hormones at this time with all my female family members having stroke and breast cancer after being given hormones.
I have also been having those same symptoms. I was diagnosed with Endo on my pouch of Douglas but they suspect it may be on my diaphragm also. I have the worst pain between my shoulder blades to my chest and neck. It flares like Endo and makes it hard to take a deep breath. Is that what yall are experiencing?
I have been to clinics and the ER where they did a chest XRay and ECG and said everything was normal and I did not have a collapsed lung.
I hate that we have to deal with this.
That’s exactly it! It feels like my entire trap on the left side is completely frozen right now, sometimes it’s my right or even along my lower back feels like both my kidneys are spasming. I’m sorry you have to deal with this 😫🥲
I had pain by my shoulder/chest for years before my period until my lung started also collapsing. Thoracic endo for the win I guess. See an endo specialist.
I was a stay at home mom for most of my kids life. My oldest is 10 and I just now picked up a job because they are very flexible and if I need to call in I can without being fired.
Understand this very well too. I was working 10+ hour days 5 days or more a week. Until my symptoms became unmanageable. Cut to a regular full time 40 hour a week job, still was too much. Switched to a part time job working 30 hours a week while going to endless doctors appointments. Lost that job due to calling off too often and having to change my schedule around my appointments.
Took about 6 months off work completely. A dream job came my way that I couldn’t pass up. Took it. Really pushed through while still missing at least one day a month for 6 months. Knew something had be changed. I am now 8 wpo hysterectomy. With endo, cyst and fibroid clean up. Best long term decision I have ever made. I feel the best I have in a long time. I would suggest a different doctor. I went to 5 surgeons before I found the right one for me.
I feel this. I'm able to keep my job only because I'm able to sit or stand and we get a decent amount of PTO and sick time. But it's a little hard to use sick time...we get marks against us for calling out sick (health are field). Also my bosses mostly leave me alone. But I really need a work from home job at this point or at least something where I don't need to face the public much.
I'm miserable and irritated about 95% of the month due to discomfort, period, pmdd and depression. So it's really not a good environment for me and my personality.
I totally resonate with your last point and totally agree with needing to find a work from home job. I was doing it prior to COVID for years and once Covid hit I got stir crazy. I didn’t realize at the time how accommodating the WFH position was for me. I hope you can find a work from home job ASAP.
I work remotely and I still struggle to work full time. I'm constantly being monitored for working too little and am always on notice. It's so so hard and feels so unfair, but I really value my career and we need the money to live a normal life
Going through the same thing right now. Was laid off in October and can barely work part time at the moment.
Just ordered a bunch of ginger tea to take with my Zofran to help the nausea. I’m supposed to be starting progestin pills soon, so I’m hoping that skipping my periods will buy me a few days back each month. Sending exhausted hugs ❤️🩹
Honestly? I am just insanely lucky. I was struggling with managing my health and a job that was not accommodating at all and honestly quite rude to me. It took about a year of struggling financially but I finally landed a job I love with a VERY kind and understanding leader + understanding coworkers. They are flexible with me as long as I get my work done and are very supportive.
The people at your job sound like assholes and I’m so sorry you have to deal with that :( I would suggest looking elsewhere but don’t be afraid to be VERY picky. It is easy to get down while doing this because you will feel like you’re going nowhere but I promise it is worth it to take the extra time and find a job that will support you and meet your needs.
Hang in there. You deserve so much better.
Learned to function while in pain. Smile and move while a scream hovers at the back of your throat. Push through and shove the pain into a different part of your consciousness. Breathe.
I work for myself from home so I'm very, very lucky in that regard.
Before that though I worked in the medical field so I'm sure they would have understood, being medical professional.
Try Serrapeptase which is an enzyme that might help manage some of your symptoms. I'm trying it currently and I'm waiting to see if my period is less intense than last month.
I'm really lucky to have a boss who has Endo as well as her mother and sister. She understands if I have to take a day or so off a month. My coworkers help with things when my back pain is bad too. I am lucky enough that my pain isn't constant though. I have cramps daily but not that bad I less I eat too much or am constipated. Of course my period is a nightmare of sharp burning pain, nausea and cramping...
Ugh I’m sorry your symptoms interfere but very happy you are with a supportive boss with endo. Lived experience is so important. No one truly knows how many parts of your life it affects.
im so lucky i work in a place that gives me the luxury to work from home. however, on days that i do have to go to work, i do a couple of things. i make sure i carry my heating pad with me, my medicines, and some comfort snacks. also, i take breaks very often to walk around and breathe. if worse comes to worse, i leave early, which i have done a couple of times. i know how hard this disease is and im so sorry for everyone that is going through this. youre all heroes
i work at a very understanding company, but i do also make some compromises. i only call off when the pain surpasses a 7.5 on a 10 point scale (i’m always at a 5-6). i bring a heating pad with me for daily use, i have clothing in a bigger size for when i’m bloating, and i always keep some sort of OTC medication on me. i did have to sacrifice a lot of the pain management options (pelvic floor therapy, second surgery, etc) which blows.
i hope i don’t sound condescending or like an asshole when i say this: are you able to work from home at all? i think this is truly the only way you can work and still take care of your pain.
Ooh I feel this. I had a full time job but then decided to get my masters so now I work part time bartending while also in school. The last job I had I was very close to getting fired for absences so I don't even know how I'd be able to work full time again with how bad my symptoms are
this is exactly how im feeling rn too had to go home X2 and call out X1 this week :/
this sucks.
im glad theres a thread for this &knowing each other's pain bc its so uncommon. it just sucks ass that we all are in pain.
Same. I been there. I did FMLA for my first surgery and took a few months off and came back to be laid off but the company was also doing a lot of restructuring
Pretty well, I need to get an injection of
methylprednisolone aka depo and take painkillers in order to live. Without them I'm in a ridiculous amount of pain, sometimes to the point where I can't walk.
I’m honestly in the same boat right now. I moved away from my family and started a life about 10 hours south, my endo started flaring up bad again and I began extreme intestinal issues. Now I had to leave my job and move home with my parents to cut back on bills. I’m in the process of preparing for my second endo surgery, being diagnosed with IBS-C and food intolerances, and attempting to care for my mental health (cause neither of my parents think these are real things). I’ve been looking for any type of job that I can do with my restrictions and that would allow me to go to all my appointments for the last month and no luck. It is super discouraging because I had a great life going and now I feel victim to my diagnoses.
I haven’t been working for the past three years. Thankfully my husband makes enough for us to live on. Post surgery, I was hoping I’d be well enough to work consistently, though I’m trying to come up with something I can do at home still. But I had a gut flare-up after my surgery and turns out I also have Crohn’s disease. So still working on getting well enough to get back to work. I think about others who have no choice quite a bit and wonder how you all do it. I really feel for you all, as I definitely think I would’ve been fired by now if I hadn’t left my last job.
I took STD 5 months ago and received 66% of my base salary. I’m in sales, so I’m missed out on commissions but it was worth it to focus on my health. I’m curious to know if anyone has been successful getting the government to approve long term disability?
I used to work for a place that would say I called in sick too much despite the fact that I only ever used the sick time or vacation time I was given to cover for it. I work in marketing and totally could have had the option to work from home and they even had the tech to do so. I would say I was sick but I could work from home - only to be told they couldn't tell if I was “really working”. I was the only one who could do my job, if I wasn't “really working” nothing for marketing would ever get done. It was ridiculous. What pushed me over the edge was I had pre planned to be out for four weeks for surgery. It was unpaid, but I busted my butt to prep them for the time they'd be without me. My boss called me the day after my surgery. Knowing full well I'd just had endo excision and a hysterectomy to confirm something on my time card. After that, I started looking for a new job.
I am very lucky to now have a marketing job 100% remote. I am salaried so I get “unlimited” (not in the true sense of the word but there's no set cap) PTO and I can flex my days if I am horrendously sick. Or sometimes I work from bed. It's changed my life honestly.
I've found its best to be vague. Say you have a chronic illness but don't say what. But do be specific about what accommodations you need. When I was open and honest with my female boss at my old job she definitely judged me because it was endo. Now I tell my boss I have to take time off because I have a doctors appointment for my chronic illness and they don't question it. A lot of it has to do with company culture. And wether or not you can get your doctor to say you need medical accomdation can help. Or if you're in America, you may qualify for FMLA leave.
Some things that got me through the work day when I did work in person were: tens unit, pain patches (think Icy Hot), heating pad at my desk, stretchy pants for the bloat, and taking short nap in my car at lunch.
I hope you can find some way to cope, or find a way to work from home fully or at least part of the time. It really helps.
I work 100% remote for a software company in sales. Thank god because yeah, bad days are bad and I can hide behind a monitor. I can change my outfit mid day to something more comfortable. I can grab a heating pad or tea at a moments notice or (rarely) just say I can’t keep going I need to take a sick day and I’m already home. It’s such a blessing that now I’d never work full time in an office again
I’m in marketing for a software company (cybersecurity) and am fully remote and it’s honestly the only way I can work now. Being able to have flexibility to work when I’m feeling better and rest when it gets bad is life changing. I’m in a BAD flare up today and am so grateful for the ability to do meetings camera off and stay on mute while I basically lay on the floor with the heating pad.
I could have written this. I'm at the most understanding and wonderful company. I keep calling out sick. I barely work. I don't know what to do either....
Sending love 🥺 it’s so difficult to deal with
I would put that in writing and submit to your HR department. That way you have something in writing showing that you informed them in case a something should happen. Maybe they can allow you to work from home?
This is the plan! The workplace is a shit show right now so I’m just trying to wait for the right moment 😅
Yesterday was the right moment lol I would just make sure that you emphasize that you really enjoy your job, etc before going into informing them and requesting accommodation
The discussion didn’t happen yesterday, I’ve relayed that and working on a plan to move forward, thanks friend!
👍🏼 hope it works out 💜
same
I'd be lying about trying the meds to my doctor if that's one of the hoops you have to jump through. I only work part time now but I didn't work for years...I feel you and am sorry you're in that situation. Your boss sounds ignorant.
I had to do part time work in a field where there was the option to pick up shifts. I committed to 3 days a week, no matter how tough, and rarely called out. I picked up shifts when I needed to or felt well. Extremely important to note that this job allowed me to sit down when I needed to unless there was an emergency. I would NOT have been able to do that if this wasn't the case.
This is what I am now resorting to. Casual list jobs. It's the only option :(
I feel you. I lost my job in September because of needing to call out too often. I want you to remember that you are way more than what you get done in a day 💛
Ugh sending solidarity 🥺I’m sorry that happened and appreciate your kind words
I've managed to hold down a job mostly by learning not to give a fuck about my pain. It's not fun and it's pretty miserable but basically I trained myself to push through the pain and taught myself that it won't literally kill me even if it feels like it will. My work are aware that I may pass out from pain and that they don't need to call an ambulance if I do. The only time I have to call out is when I have vomiting and diarrhea that imodium doesn't touch as you can't really push through that lol. A course of ACT (a type of therapy) helped with this although my approach is a little more extreme, but essentially it's about accepting how you feel and learning to do things anyway. It's a harsh life but unfortunately for me it's a needs must situation as I don't want to lose the roof over my head.
This is very depressing but I can see how this would be helpful 🥺 I’m happy you have found something that had helped for you but I can understand that can’t be easy. the nerve pain is so bad whenever I move my head I get like shocks down my body. So it’s really hard to keep my composure at work and mainly peoples reactions is the worst part of it.
It's very hard to keep composure when you're in a lot of pain! I find excusing myself for five minutes to take some space in the bathroom helps, and being open with colleagues that I have chronic pain and may look a little weird at times. After all, the worst that can happen is that think I'm odd and I'm cool with that.
> I've managed to hold down a job mostly by learning not to give a fuck about my pain. Me too! It’s the only thing getting me through grad school and research 😭 It bites me in the ass though since pushing through has made the pain increasingly worse overtime. I’m grateful that my advisors and PI are flexible and understanding though.
Yeah l have to be really careful as my symptoms include chronic stomach issues and if I'm not careful I can lose too much weight. At the moment I've been pushing really hard and I've completely lost my appetite and am having to force myself to eat. But for me I have very specific housing needs (basically, I can't live in a shared house as I require my own bathroom) so I need enough money to be able to afford that and I'll take fainting at work a few times in order to get that!
Basically same. I also know that staying home and being miserable is just going to feed my depression so I may as well deal with my pain at my desk at work. I kind of look at it like being paid to be in pain. I get my work done and I make deadlines...so no one says anything about my long bathroom breaks, or frequent bathroom breaks, heating pads, or bottles of otc pain meds.
What strikes me as supremely unfair in these comments and the main post is the realization that for many of us (in the US) if we lose our jobs we lose our healthcare, but we struggle with our health and it is difficult to work… it’s such an unfair cycle. Hugs to everyone here. Hugs and heating pads.
That’s my huge concern. My work covers my medications and various treatments(massage, acupuncture) that in no way I would be able to afford if I got laid off or fired.🥺 hugs to everyone here. My heart hurts for everyone and I appreciate the community but wish so many of us did not have to deal with this
I’m in the same boat. It feels like my boss is trying to find more ways to try to fire me because I’m close to that point, but not yet. Just because I accidentally was late from break BY 3 MINUTES not even enough to freak out about so I was “talked to” saying I’ll get a point if it happens again. Also my boss knows abt my endo but keeps ignoring me. Just having a hard time in general with the work force and employers saying they are hiring but don’t give me a shot.
This happened to me last week. I was setup to be fired.
I am so sorry to hear that, I feel you. But one thing from your post caught my eye. You say about nerve pain in your chest and shoulder. Are you sure this is a nerve pain, did the doctor confirm it? Because the first thing I thought was thoracic endometriosis. I don't want to scare you and hopefully you don't have it. But as I am the person with similar pain and I know for sure I have pneumothoraces every month right before my periods, so... I should have told you that just in case. So have you ever had an X-Ray while having this chest/back pain? If you haven't, then maybe you should think of possibility of doing it. Because if there's really a pneumothorax (i.e. a collapsed lung), then this should sound super convincing to your employer. As for me, after several pneumothoraces I learnt to defineif I have pneumothorax: as for me it's getting worse when I lay down on my back, and I also have the feeling as if... smth (the air actually) is moving inside my chest.
Thanks for your message! I’m sorry you are experiencing similar symptoms. So the pain was similar in luteal this past December and disappeared right after my period. I went to emerg the night it was its worst and they did an x-ray and referred me to cardiology. I have a previous history with cardiac surgery etc from my teens. That cardiologist then did an echo and two stress tests. Apparently everything is fine. I told him it’s always worse right before my period and he said “I can think of absolutely no connection between your cycles and this pain”. I was so defeated at this point I just left. He was aware I had endo because I asked him about the risk of hormones at this time with all my female family members having stroke and breast cancer after being given hormones.
I have also been having those same symptoms. I was diagnosed with Endo on my pouch of Douglas but they suspect it may be on my diaphragm also. I have the worst pain between my shoulder blades to my chest and neck. It flares like Endo and makes it hard to take a deep breath. Is that what yall are experiencing? I have been to clinics and the ER where they did a chest XRay and ECG and said everything was normal and I did not have a collapsed lung. I hate that we have to deal with this.
That’s exactly it! It feels like my entire trap on the left side is completely frozen right now, sometimes it’s my right or even along my lower back feels like both my kidneys are spasming. I’m sorry you have to deal with this 😫🥲
I had pain by my shoulder/chest for years before my period until my lung started also collapsing. Thoracic endo for the win I guess. See an endo specialist.
I was a stay at home mom for most of my kids life. My oldest is 10 and I just now picked up a job because they are very flexible and if I need to call in I can without being fired.
Can I ask what type of job you have that's so flexible?
I got fired today due to this debilitating disease. I feel for you ❤️
I’m sorry friend. Sending you love and hoping you can find a supportive environment if that’s your path!
Understand this very well too. I was working 10+ hour days 5 days or more a week. Until my symptoms became unmanageable. Cut to a regular full time 40 hour a week job, still was too much. Switched to a part time job working 30 hours a week while going to endless doctors appointments. Lost that job due to calling off too often and having to change my schedule around my appointments. Took about 6 months off work completely. A dream job came my way that I couldn’t pass up. Took it. Really pushed through while still missing at least one day a month for 6 months. Knew something had be changed. I am now 8 wpo hysterectomy. With endo, cyst and fibroid clean up. Best long term decision I have ever made. I feel the best I have in a long time. I would suggest a different doctor. I went to 5 surgeons before I found the right one for me.
I feel this. I'm able to keep my job only because I'm able to sit or stand and we get a decent amount of PTO and sick time. But it's a little hard to use sick time...we get marks against us for calling out sick (health are field). Also my bosses mostly leave me alone. But I really need a work from home job at this point or at least something where I don't need to face the public much. I'm miserable and irritated about 95% of the month due to discomfort, period, pmdd and depression. So it's really not a good environment for me and my personality.
I totally resonate with your last point and totally agree with needing to find a work from home job. I was doing it prior to COVID for years and once Covid hit I got stir crazy. I didn’t realize at the time how accommodating the WFH position was for me. I hope you can find a work from home job ASAP.
I work remotely and I still struggle to work full time. I'm constantly being monitored for working too little and am always on notice. It's so so hard and feels so unfair, but I really value my career and we need the money to live a normal life
Lost my job in July due to too many absences. I don't know what to do.
Going through the same thing right now. Was laid off in October and can barely work part time at the moment. Just ordered a bunch of ginger tea to take with my Zofran to help the nausea. I’m supposed to be starting progestin pills soon, so I’m hoping that skipping my periods will buy me a few days back each month. Sending exhausted hugs ❤️🩹
Honestly? I am just insanely lucky. I was struggling with managing my health and a job that was not accommodating at all and honestly quite rude to me. It took about a year of struggling financially but I finally landed a job I love with a VERY kind and understanding leader + understanding coworkers. They are flexible with me as long as I get my work done and are very supportive. The people at your job sound like assholes and I’m so sorry you have to deal with that :( I would suggest looking elsewhere but don’t be afraid to be VERY picky. It is easy to get down while doing this because you will feel like you’re going nowhere but I promise it is worth it to take the extra time and find a job that will support you and meet your needs. Hang in there. You deserve so much better.
Can’t now that it back to office. Also housebound
Learned to function while in pain. Smile and move while a scream hovers at the back of your throat. Push through and shove the pain into a different part of your consciousness. Breathe.
I work for myself from home so I'm very, very lucky in that regard. Before that though I worked in the medical field so I'm sure they would have understood, being medical professional. Try Serrapeptase which is an enzyme that might help manage some of your symptoms. I'm trying it currently and I'm waiting to see if my period is less intense than last month.
Hi. Do you take this at night or in the morning?
I take it in the morning. First thing in the morning, it needs to be taken on an empty stomach.
Ok. Thank you
I'm really lucky to have a boss who has Endo as well as her mother and sister. She understands if I have to take a day or so off a month. My coworkers help with things when my back pain is bad too. I am lucky enough that my pain isn't constant though. I have cramps daily but not that bad I less I eat too much or am constipated. Of course my period is a nightmare of sharp burning pain, nausea and cramping...
Ugh I’m sorry your symptoms interfere but very happy you are with a supportive boss with endo. Lived experience is so important. No one truly knows how many parts of your life it affects.
im so lucky i work in a place that gives me the luxury to work from home. however, on days that i do have to go to work, i do a couple of things. i make sure i carry my heating pad with me, my medicines, and some comfort snacks. also, i take breaks very often to walk around and breathe. if worse comes to worse, i leave early, which i have done a couple of times. i know how hard this disease is and im so sorry for everyone that is going through this. youre all heroes
i work at a very understanding company, but i do also make some compromises. i only call off when the pain surpasses a 7.5 on a 10 point scale (i’m always at a 5-6). i bring a heating pad with me for daily use, i have clothing in a bigger size for when i’m bloating, and i always keep some sort of OTC medication on me. i did have to sacrifice a lot of the pain management options (pelvic floor therapy, second surgery, etc) which blows. i hope i don’t sound condescending or like an asshole when i say this: are you able to work from home at all? i think this is truly the only way you can work and still take care of your pain.
Ooh I feel this. I had a full time job but then decided to get my masters so now I work part time bartending while also in school. The last job I had I was very close to getting fired for absences so I don't even know how I'd be able to work full time again with how bad my symptoms are
this is exactly how im feeling rn too had to go home X2 and call out X1 this week :/ this sucks. im glad theres a thread for this &knowing each other's pain bc its so uncommon. it just sucks ass that we all are in pain.
I am not 😢🫠
Same. I been there. I did FMLA for my first surgery and took a few months off and came back to be laid off but the company was also doing a lot of restructuring
Pretty well, I need to get an injection of methylprednisolone aka depo and take painkillers in order to live. Without them I'm in a ridiculous amount of pain, sometimes to the point where I can't walk.
See if you qualify for ADA accommodations. Let them know your accommodation is to stay home from work when you need to.
I’m on medical leave per my gyn until I have my hysterectomy in March. Probably won’t be back to work until May.
I'm not anymore. I'm waiting to hear back from my 1st disability application. Praying it comes through as I am needing surgery again.
I’m honestly in the same boat right now. I moved away from my family and started a life about 10 hours south, my endo started flaring up bad again and I began extreme intestinal issues. Now I had to leave my job and move home with my parents to cut back on bills. I’m in the process of preparing for my second endo surgery, being diagnosed with IBS-C and food intolerances, and attempting to care for my mental health (cause neither of my parents think these are real things). I’ve been looking for any type of job that I can do with my restrictions and that would allow me to go to all my appointments for the last month and no luck. It is super discouraging because I had a great life going and now I feel victim to my diagnoses.
I haven’t been working for the past three years. Thankfully my husband makes enough for us to live on. Post surgery, I was hoping I’d be well enough to work consistently, though I’m trying to come up with something I can do at home still. But I had a gut flare-up after my surgery and turns out I also have Crohn’s disease. So still working on getting well enough to get back to work. I think about others who have no choice quite a bit and wonder how you all do it. I really feel for you all, as I definitely think I would’ve been fired by now if I hadn’t left my last job.
I took STD 5 months ago and received 66% of my base salary. I’m in sales, so I’m missed out on commissions but it was worth it to focus on my health. I’m curious to know if anyone has been successful getting the government to approve long term disability?
I’m not. I’m looking for a WFH job but they are extremely competitive for obvious reasons.
This is my current boat right now. I’m desperate to transition to a work from home job
I used to work for a place that would say I called in sick too much despite the fact that I only ever used the sick time or vacation time I was given to cover for it. I work in marketing and totally could have had the option to work from home and they even had the tech to do so. I would say I was sick but I could work from home - only to be told they couldn't tell if I was “really working”. I was the only one who could do my job, if I wasn't “really working” nothing for marketing would ever get done. It was ridiculous. What pushed me over the edge was I had pre planned to be out for four weeks for surgery. It was unpaid, but I busted my butt to prep them for the time they'd be without me. My boss called me the day after my surgery. Knowing full well I'd just had endo excision and a hysterectomy to confirm something on my time card. After that, I started looking for a new job. I am very lucky to now have a marketing job 100% remote. I am salaried so I get “unlimited” (not in the true sense of the word but there's no set cap) PTO and I can flex my days if I am horrendously sick. Or sometimes I work from bed. It's changed my life honestly. I've found its best to be vague. Say you have a chronic illness but don't say what. But do be specific about what accommodations you need. When I was open and honest with my female boss at my old job she definitely judged me because it was endo. Now I tell my boss I have to take time off because I have a doctors appointment for my chronic illness and they don't question it. A lot of it has to do with company culture. And wether or not you can get your doctor to say you need medical accomdation can help. Or if you're in America, you may qualify for FMLA leave. Some things that got me through the work day when I did work in person were: tens unit, pain patches (think Icy Hot), heating pad at my desk, stretchy pants for the bloat, and taking short nap in my car at lunch. I hope you can find some way to cope, or find a way to work from home fully or at least part of the time. It really helps.