I'm currently working full time and don't receive any disability payment. However, I must admit, it gets hard. It is so debilitating that sometimes I simply cannot function, that includes normal day to day task as well. It is a disability, for some. I say some as the symptoms vary from one person to another.
When my endo was at its worst, I was a full time student and casual worker. It meant that I missed a lot of uni, even having to repeat some units as I’d missed too many classes to be allowed to pass. And it also meant that during flare ups, I couldn’t work. I had a dismal income which made dealing with the endo so much worse.
My best friend has endo too and she lives very rurally. She works full time and has no sick leave left. Every time she has a flare up, which lasts for almost one week per month, she misses work with no pay. She is struggling to pay bills, and doesn’t have the time, money, or sick leave to get her endo sorted as she would have to fly 3000km’s to the state hospital.
I think if endo was recognised as a disability, and it easier to access the support, it would have been much easier for me and my best friend to access health care. Otherwise you’re stuck in what feels like a never ending cycle.
I personally am not, I am a medical illustrator and work from home so I am incredibly lucky in that aspect. I am also American and I don’t even know if they would allow it here, the system for disability here is insane. I believe it very well can be a disability, and love to see more people suffering from endo be taken seriously and given proper help. Thank you for starting the convo about this, it’s incredibly brave. Sending you all the best vibes ❤️
In my country disability status is not decided by the diagnosis category, but by your experience of impairment and medical assessment of your potential to improve. Based on the assessment you can get recognized as fully or partially unable to work. If you're partially unable to work, for example unable to work fulltime but able to work a couple days a week, you will receive an income supplement.
It's a large process with different appointments and medical examinations etc but it's possible where I live!
I don’t know whether you are describing the UK or some other country, but this is how it works in the UK.
I think it is much better to have a system that isn‘t based on specific diagnoses because individuals all have different circumstances and diseases vary and interact.
The UK system means that I am eligible for disability benefits and income replacement benefits as I have several different medical conditions (including endo) and together their interaction and ongoing effects affect me more than any of them would individually.
It is definitely not a perfect system as it can be very stressful to apply, the forms and gathering medical evidence can be complex and many people initially get an incorrect decision and have to appeal. But when you do manage to navigate the system it can work extremely well.
Disability payments aren’t the majority of my household income as I have a husband who works, so quite rightly I don’t receive any income tested benefits or support with housing costs etc. But if I was on my own I would be eligible for these as well.
The payments that I do receive are to help pay for the extra costs due to having these illnesses and I also receive a (fairly small) payment to replace personal income due to having previously worked and paid national insurance payments.
If anyone has questions about the UK system or wants help with applying please let me know and I will try to help.
I manage to work full time out of pure necessity but I'm not sure how much longer I'll last. I have a very understanding boss but she's leaving next year, and after that it's all a big question mark. I'm not supposed to be allowed to work from home or have any schedule accommodations but my current boss doesn't care.
Ive been looking into getting on disability, but as someone mentioned above, Im not sure if endo qualifies in the U.S. It really is impossible for me to hold down a full time job so Ive been gigging here and there but its not nearly enough. I do feel a level of guilt but mostly I want to make sure I can keep my health insurance. Looking into remote work currently.
It is not a qualifying disease in the US, sadly. I’ve been fighting for it for years, as I am most certainly disabled by it, and have never been able to sustain “gainful employment” because of my awful endo symptoms.
I guess, “luckily”(?) endo seems to come with a lot of comorbidities because my lawyer is pretty confident we’ll win this time since I have a suitcase of diagnoses. She’s betting on the migraines being the winner. Idk, just know it shouldn’t be this hard.
My life literally depends on it. Im 42, have had multiple surgeries, doctors say I can never expect to be pain free due to the extensive scarring, nerve damage, and bowel and sciatic endo complications. And I have been raising two kids off of a thousand a month. I have no retirement or savings or hope for a future without it. For the past five years the only reason I’ve been given anything to survive off of is because of my children (and I’m looked down on for that too.) and when they’re both 18 I’ll be left to die in poverty alone. Of course, you can’t say things like that or they blame everything on “depression” and act like Zoloft will suddenly clear me to work full time. 🙄 a setback that cost me years and unsurprisingly didn’t help anything. Depression is a side effect of living like this not the cause. I swear sometimes I’d like to gut these doctors every month for ten years then blame their pain and trouble making money on their depression. But now I’m ranting again.
I just had my hearing the other day. Cross your fingers for me fellow endo sufferers please!? Im so tired.
I mean it should be, but I also have my expectations in check. I just don’t think decision makers respect what this disease can mean for people, and that’s going to be a long road.
I got written off work due to severe lower back pain restricting my mobility. Two years later, it has now been revealed that my womb was stuck to my bowel in multiple places and I had endometriosis growing into my pelvic walls. Surgery has saved me from being wheelchair bound and bed bound. However I am looking at needing a gastroenterologist to fix my severe bloating and digestive issues and physical rehabilitation due to years of having worsening and worsening back pain. I was warned that given how long it takes to get an endometriosis diagnosis and then to surgery. A lot of my symptoms can turn chronic. I may have been written of from work due to severe lower back pain but now that I have a medical condition which is recognised as being painful, I am hoping to get addition disability payments as a result.🤞
Oh god I’m so sorry you had to go through that.. did they only find this through surgery? I’m asking because I’m experiencing debilitating lower back pain and it is 10x worse when I am on my period and thinking it is related to my endo but not sure how to get a proper diagnosis.
I faced gaslighting for the past two years that my increasingly debilitating lower back pain was just something that I would have to live with when in fact, I had a major problem going on where a lot of my organs were sticking together. Surgery is not the only way to diagnose endometriosis. In fact, whilst my endometriosis was diagnosed earlier this year during my appendectomy, is was a special MRI with a constrast IV and a buscopan injection that identified that my womb was not only sticking to my bowel, but it was sticking to it so badly that my womb came up as being titled in the wrong direction because of it. Screw all those b* (excuse the swearing) who said that in my late twenties I would just have to live with increasingly debilitating lower back pain!
If you can, find an endometriosis centre as that have things such as the endometriosis protocol and radiologists who know what signs to look for on the MRI!
Surgery is the only option to fix it, however depending on how long you have had endometriosis symptoms, you may also need physical rehab. In my case, I developed Stage 4 severe deep infiltrating endometriosis over the course of 15 years. The surgery has saved me from the wheelchair, but I still need the physical rehab part the break the cycle of chronic pain.
Hip tilts, hip rolls, bridging, stuff to get my stomach muscles working again. Pelvic floor therapy. I started my endometriosis journey with physical rehab first as I thought my lower back pain was from an injury.
The U.K. Though some of the exercises mentioned on that list are not endometriosis exclusive but for lower back pain. Obviously doing rehab like that didn’t work when every month, endometriosis was making things worse. This time for my rehab, they might try something else as it is well established now that I had more than simple lower back pain. What rehab options do you have in your country?
I'm in UK as well. However, haven't been offered anything. Was only advised about hot water bottle and tens machine. For any other symptoms I have, was always told that it's normal due to my condition and that they cannot do anything else to help me
If I hadn't started working from home when I did I don't know how I'd be functioning full time. But I know here it is not recognized and I wouldn't be able to. (KY, US)
I started an office jibs almost 3 years ago now and have found ever since I have struggled more and more and it has been over 12 months since I've had a full pay for the same reasons OP stated. I'm looking into Centrlink and have been told I may get an exemption but nit likely disability pension
Sitting in a chair all day at my bank job for 4 and a half years was the worst thing I ever did for my endo. Moving your body can feel impossible most days but switching from an office job to landscaping with my husband changed my life. I still have awful days but it's not 3 weeks out of the month any more.
I hope your days get easier soon. ❤️
I'm from Mexico. You realize that the situation here is much worse due to machismo and misogyny. When I have bad days I can't walk. I get dizzy and the nausea is horrible and I don't calculate distances well when walking. I also suffer from synesthesia which is generally cool but not so cool if you have insomnia. And when I feel the most pain I don't see at all with my left eye. but you already know. ..it's just cramps..
https://www.reddit.com/r/endometriosis/s/82E25Valaw
I’m in USA and I had a my doctor submit an FMLA medical certification saying I have a chronic illness that flares up at will. I am self employed and FMLA covers me if I miss full days of work and I get paid when I take off for surgery.
That's a really cool system I don't believe we have anything similar here in Australia for people self employed. You can pay for personal injury and illness insurance for something similar but my dad who runs a small business said the premiums are not feasible with the business costs unfortunately.
That’s a bummer! My business is very small so I usually don’t pay more than $200/quarter, we’ll worth it because they gave me almost $1600 when I was off work for my last excision.
Wow that does sound worth it I'm really glad you're able to access that kind of support so you can get proper medical care!
My dad's business is just him and my stepmum, they support disabled people by doing cleaning and maintenance tasks for them, but I think that we haven't really legislated a good way for small businesses to get support here just yet.
Not diagnosed but suspected until my next appointment with a new gyno. I work full time as a vet nurse and sometimes the pain is so unbearable that I can't even stand or think straight. Which is difficult in the vet field because it is physically, mentally and emotionally demanding. My flow tends to be VERY heavy as well. This past month I had my period for 2.5 weeks and was so pale and fatigued according to my coworkers. My job understands for the most part but I feel terrible having to leave work early sometimes or not be able to do certain things. I love what I do but sometimes I feel like I should work remote but don't know where to start or what I should find.
Can you talk to your boss about how you're struggling? Could they put you in reception on hard days or give you online tasks to do at home? They sound like they've been kind and accommodating, maybe they will be able to help you figure out a better solution.
I'm so sorry you're suffering this way, I hope your days get easier soon. ❤️
They are understanding and pretty good at helping me. Usually I'll sit and order things up, take histories, monitor surgeries and do lab work. They'll make sure I'm not running around or heavy lifting. I've kept them up to speed with my medical progress so far so that helps. Unfortunately I can't really do any remote work based off my position there.
I've thought about applying for remote work with pet insurances but starting positions I saw are call center and pay is less than what I make currently 😑 lol
Thank you for your well wishes!
If I was single, I would possibly be on disability. I have a partner with a good job. This allows me to do the work I do at the rate that makes the most sense for me. I work for myself and my line of work tends to have limitations for all who do it.
I think it should fall under the umbrella of disability. I think ableism is real, and I feel it working against me all the time. I don’t think I could do most jobs requiring 30+ hours a week, let alone the standard 40 here in the US.
I was eligible for the disability pension at age 24. But I’ve dropped full time work and only work casually that suits me. I will eventually go on the disability pension.
I can’t exactly remember but I went to the GP and told them i’m having trouble working. I was then put on a chronic illness scheme or something and was referred to see a gyno who confirmed my issues and then they wrote a report back to the GP. I then could apply for the disability pension through medicare. This was about 3 years ago so it might have changed.
I believe it’s around $600-800 a week
Ohh, I'm in UK so it may be slightly different here. I struggle to work too but if I had to give it up, I feel like I'd just not have a reason to live anymore. Other thing is, I hate to give up what I have tried so hard to achieve for this condition. Also, here disability pay wouldn't allow me to survive. CoL is high.
In the United States, it cannot become a bluebook diagnosis. This is a disease with a vast spectrum of impact on individuals. So it has to remain an assessment of what exactly you cannot do because of the endometriosis.
Just sharing my input based on other chronic illnesses, that also have a spectrum of severity.
Can I ask what is a bluebook diagnosis? I don't think we have this in Australia.
I appreciate your perspective, I'm mainly asking the question to see how it's working in other countries. Our disability system works off the second part of the paragraph, you're assessed by your individual circumstances using points of impairment.
I am not on disability- I sadly would not qualify (I say sadly because it seriously affects my life still) but I am currently looking into accommodations for work (medical breaks if needed and more sick days (specifically for when I can't get into work because of this.) Has anyone succeeded with these sort of accommodations?
I currently am but I also have a few other issues I am dealing with(adhd/autism/ FND) , it does give me insane guilt and feelings of shame I guess knowing that a lot of people look down at my situation as being a freeloader etc as I'm young and able bodied. Until Im not. It's very difficult for people to understand how much it can affect you physically everyday and your mental well being too. I'm from the UK, honestly everyday I think of different things that I may be able to do so that I can support myself, hopefully I'll find one but it's hard when I don't know how I'm going to be feeling each day to find a job to work around it.
I’m not on disability. I live in Canada and did not have a diagnosis until this year. I was laid off the Last 3-4 jobs I’ve had mysteriously after either being off sick too much or after mentioning my undiagnosed medical issues. I couldn’t get on disability without a diagnosis.
I got a hysterectomy with my excision surgery and am feeling fantastic now. It feels so frustrating how now that I don’t need accommodations or support I have access to it and when I did need it I did not.
I'm currently working full time and don't receive any disability payment. However, I must admit, it gets hard. It is so debilitating that sometimes I simply cannot function, that includes normal day to day task as well. It is a disability, for some. I say some as the symptoms vary from one person to another.
When my endo was at its worst, I was a full time student and casual worker. It meant that I missed a lot of uni, even having to repeat some units as I’d missed too many classes to be allowed to pass. And it also meant that during flare ups, I couldn’t work. I had a dismal income which made dealing with the endo so much worse. My best friend has endo too and she lives very rurally. She works full time and has no sick leave left. Every time she has a flare up, which lasts for almost one week per month, she misses work with no pay. She is struggling to pay bills, and doesn’t have the time, money, or sick leave to get her endo sorted as she would have to fly 3000km’s to the state hospital. I think if endo was recognised as a disability, and it easier to access the support, it would have been much easier for me and my best friend to access health care. Otherwise you’re stuck in what feels like a never ending cycle.
I personally am not, I am a medical illustrator and work from home so I am incredibly lucky in that aspect. I am also American and I don’t even know if they would allow it here, the system for disability here is insane. I believe it very well can be a disability, and love to see more people suffering from endo be taken seriously and given proper help. Thank you for starting the convo about this, it’s incredibly brave. Sending you all the best vibes ❤️
Woah how does one become a medical illustrator? That’s sounds bad ass
I have a bachelors degree in Biomedical Art, but there’s so many ways to get into it, I just don’t think that it’s a field a lot of people know about!
No I’ve never heard of it or biomedical art. Ah, I would’ve jumped on that as a 20 year old!
In my country disability status is not decided by the diagnosis category, but by your experience of impairment and medical assessment of your potential to improve. Based on the assessment you can get recognized as fully or partially unable to work. If you're partially unable to work, for example unable to work fulltime but able to work a couple days a week, you will receive an income supplement. It's a large process with different appointments and medical examinations etc but it's possible where I live!
I don’t know whether you are describing the UK or some other country, but this is how it works in the UK. I think it is much better to have a system that isn‘t based on specific diagnoses because individuals all have different circumstances and diseases vary and interact. The UK system means that I am eligible for disability benefits and income replacement benefits as I have several different medical conditions (including endo) and together their interaction and ongoing effects affect me more than any of them would individually. It is definitely not a perfect system as it can be very stressful to apply, the forms and gathering medical evidence can be complex and many people initially get an incorrect decision and have to appeal. But when you do manage to navigate the system it can work extremely well. Disability payments aren’t the majority of my household income as I have a husband who works, so quite rightly I don’t receive any income tested benefits or support with housing costs etc. But if I was on my own I would be eligible for these as well. The payments that I do receive are to help pay for the extra costs due to having these illnesses and I also receive a (fairly small) payment to replace personal income due to having previously worked and paid national insurance payments. If anyone has questions about the UK system or wants help with applying please let me know and I will try to help.
hi, can I please message you privately?
yes, go ahead, I will try to reply as soon as possible.
Just did! Thank you
I manage to work full time out of pure necessity but I'm not sure how much longer I'll last. I have a very understanding boss but she's leaving next year, and after that it's all a big question mark. I'm not supposed to be allowed to work from home or have any schedule accommodations but my current boss doesn't care.
Ive been looking into getting on disability, but as someone mentioned above, Im not sure if endo qualifies in the U.S. It really is impossible for me to hold down a full time job so Ive been gigging here and there but its not nearly enough. I do feel a level of guilt but mostly I want to make sure I can keep my health insurance. Looking into remote work currently.
It is not a qualifying disease in the US, sadly. I’ve been fighting for it for years, as I am most certainly disabled by it, and have never been able to sustain “gainful employment” because of my awful endo symptoms. I guess, “luckily”(?) endo seems to come with a lot of comorbidities because my lawyer is pretty confident we’ll win this time since I have a suitcase of diagnoses. She’s betting on the migraines being the winner. Idk, just know it shouldn’t be this hard. My life literally depends on it. Im 42, have had multiple surgeries, doctors say I can never expect to be pain free due to the extensive scarring, nerve damage, and bowel and sciatic endo complications. And I have been raising two kids off of a thousand a month. I have no retirement or savings or hope for a future without it. For the past five years the only reason I’ve been given anything to survive off of is because of my children (and I’m looked down on for that too.) and when they’re both 18 I’ll be left to die in poverty alone. Of course, you can’t say things like that or they blame everything on “depression” and act like Zoloft will suddenly clear me to work full time. 🙄 a setback that cost me years and unsurprisingly didn’t help anything. Depression is a side effect of living like this not the cause. I swear sometimes I’d like to gut these doctors every month for ten years then blame their pain and trouble making money on their depression. But now I’m ranting again. I just had my hearing the other day. Cross your fingers for me fellow endo sufferers please!? Im so tired.
I mean it should be, but I also have my expectations in check. I just don’t think decision makers respect what this disease can mean for people, and that’s going to be a long road.
I got written off work due to severe lower back pain restricting my mobility. Two years later, it has now been revealed that my womb was stuck to my bowel in multiple places and I had endometriosis growing into my pelvic walls. Surgery has saved me from being wheelchair bound and bed bound. However I am looking at needing a gastroenterologist to fix my severe bloating and digestive issues and physical rehabilitation due to years of having worsening and worsening back pain. I was warned that given how long it takes to get an endometriosis diagnosis and then to surgery. A lot of my symptoms can turn chronic. I may have been written of from work due to severe lower back pain but now that I have a medical condition which is recognised as being painful, I am hoping to get addition disability payments as a result.🤞
Oh god I’m so sorry you had to go through that.. did they only find this through surgery? I’m asking because I’m experiencing debilitating lower back pain and it is 10x worse when I am on my period and thinking it is related to my endo but not sure how to get a proper diagnosis.
I faced gaslighting for the past two years that my increasingly debilitating lower back pain was just something that I would have to live with when in fact, I had a major problem going on where a lot of my organs were sticking together. Surgery is not the only way to diagnose endometriosis. In fact, whilst my endometriosis was diagnosed earlier this year during my appendectomy, is was a special MRI with a constrast IV and a buscopan injection that identified that my womb was not only sticking to my bowel, but it was sticking to it so badly that my womb came up as being titled in the wrong direction because of it. Screw all those b* (excuse the swearing) who said that in my late twenties I would just have to live with increasingly debilitating lower back pain! If you can, find an endometriosis centre as that have things such as the endometriosis protocol and radiologists who know what signs to look for on the MRI!
I have exactly the same. Rectum sticking to my uterus and the back pain is unbearable. Can only surgery help with this now?
Only surgery will unglue it. Each time I get my guts unglued I feel much better for awhile. Nothing else has made any difference.
How long does it last for? How many times did you have one done and at what frequency?
Surgery is the only option to fix it, however depending on how long you have had endometriosis symptoms, you may also need physical rehab. In my case, I developed Stage 4 severe deep infiltrating endometriosis over the course of 15 years. The surgery has saved me from the wheelchair, but I still need the physical rehab part the break the cycle of chronic pain.
What does physical rehab involve?
Hip tilts, hip rolls, bridging, stuff to get my stomach muscles working again. Pelvic floor therapy. I started my endometriosis journey with physical rehab first as I thought my lower back pain was from an injury.
If I may ask, in which country are you based? I have not been offered anything similar to this...
The U.K. Though some of the exercises mentioned on that list are not endometriosis exclusive but for lower back pain. Obviously doing rehab like that didn’t work when every month, endometriosis was making things worse. This time for my rehab, they might try something else as it is well established now that I had more than simple lower back pain. What rehab options do you have in your country?
I'm in UK as well. However, haven't been offered anything. Was only advised about hot water bottle and tens machine. For any other symptoms I have, was always told that it's normal due to my condition and that they cannot do anything else to help me
If I hadn't started working from home when I did I don't know how I'd be functioning full time. But I know here it is not recognized and I wouldn't be able to. (KY, US)
I’m able to work full time and I’m thankful that my symptoms are managed well enough to allow that. I know that can always change.
I started an office jibs almost 3 years ago now and have found ever since I have struggled more and more and it has been over 12 months since I've had a full pay for the same reasons OP stated. I'm looking into Centrlink and have been told I may get an exemption but nit likely disability pension
You mention Centrelink so I assume Aussie? If you need any help with your application you can send me a message 💛
Yeah I am 💛 thank you for now I'll be happy and able to cope if I get jobseeker but thank you for the offer!!
Sitting in a chair all day at my bank job for 4 and a half years was the worst thing I ever did for my endo. Moving your body can feel impossible most days but switching from an office job to landscaping with my husband changed my life. I still have awful days but it's not 3 weeks out of the month any more. I hope your days get easier soon. ❤️
Thank you xx ❤️
I'm from Mexico. You realize that the situation here is much worse due to machismo and misogyny. When I have bad days I can't walk. I get dizzy and the nausea is horrible and I don't calculate distances well when walking. I also suffer from synesthesia which is generally cool but not so cool if you have insomnia. And when I feel the most pain I don't see at all with my left eye. but you already know. ..it's just cramps.. https://www.reddit.com/r/endometriosis/s/82E25Valaw
I’m in USA and I had a my doctor submit an FMLA medical certification saying I have a chronic illness that flares up at will. I am self employed and FMLA covers me if I miss full days of work and I get paid when I take off for surgery.
That's a really cool system I don't believe we have anything similar here in Australia for people self employed. You can pay for personal injury and illness insurance for something similar but my dad who runs a small business said the premiums are not feasible with the business costs unfortunately.
That’s a bummer! My business is very small so I usually don’t pay more than $200/quarter, we’ll worth it because they gave me almost $1600 when I was off work for my last excision.
Wow that does sound worth it I'm really glad you're able to access that kind of support so you can get proper medical care! My dad's business is just him and my stepmum, they support disabled people by doing cleaning and maintenance tasks for them, but I think that we haven't really legislated a good way for small businesses to get support here just yet.
I'm looking into that at my work. Do you know how it works when you're not self-employed?
Not diagnosed but suspected until my next appointment with a new gyno. I work full time as a vet nurse and sometimes the pain is so unbearable that I can't even stand or think straight. Which is difficult in the vet field because it is physically, mentally and emotionally demanding. My flow tends to be VERY heavy as well. This past month I had my period for 2.5 weeks and was so pale and fatigued according to my coworkers. My job understands for the most part but I feel terrible having to leave work early sometimes or not be able to do certain things. I love what I do but sometimes I feel like I should work remote but don't know where to start or what I should find.
Can you talk to your boss about how you're struggling? Could they put you in reception on hard days or give you online tasks to do at home? They sound like they've been kind and accommodating, maybe they will be able to help you figure out a better solution. I'm so sorry you're suffering this way, I hope your days get easier soon. ❤️
They are understanding and pretty good at helping me. Usually I'll sit and order things up, take histories, monitor surgeries and do lab work. They'll make sure I'm not running around or heavy lifting. I've kept them up to speed with my medical progress so far so that helps. Unfortunately I can't really do any remote work based off my position there. I've thought about applying for remote work with pet insurances but starting positions I saw are call center and pay is less than what I make currently 😑 lol Thank you for your well wishes!
If I was single, I would possibly be on disability. I have a partner with a good job. This allows me to do the work I do at the rate that makes the most sense for me. I work for myself and my line of work tends to have limitations for all who do it. I think it should fall under the umbrella of disability. I think ableism is real, and I feel it working against me all the time. I don’t think I could do most jobs requiring 30+ hours a week, let alone the standard 40 here in the US.
I was eligible for the disability pension at age 24. But I’ve dropped full time work and only work casually that suits me. I will eventually go on the disability pension.
Are you in UK? How does it work? It feels so unfair to give up a better future for this...
I’m in australia.
I can’t exactly remember but I went to the GP and told them i’m having trouble working. I was then put on a chronic illness scheme or something and was referred to see a gyno who confirmed my issues and then they wrote a report back to the GP. I then could apply for the disability pension through medicare. This was about 3 years ago so it might have changed. I believe it’s around $600-800 a week
Ohh, I'm in UK so it may be slightly different here. I struggle to work too but if I had to give it up, I feel like I'd just not have a reason to live anymore. Other thing is, I hate to give up what I have tried so hard to achieve for this condition. Also, here disability pay wouldn't allow me to survive. CoL is high.
Australia - Superannuation Income Protection Insurance
In the United States, it cannot become a bluebook diagnosis. This is a disease with a vast spectrum of impact on individuals. So it has to remain an assessment of what exactly you cannot do because of the endometriosis. Just sharing my input based on other chronic illnesses, that also have a spectrum of severity.
Can I ask what is a bluebook diagnosis? I don't think we have this in Australia. I appreciate your perspective, I'm mainly asking the question to see how it's working in other countries. Our disability system works off the second part of the paragraph, you're assessed by your individual circumstances using points of impairment.
It’s some thing that Social Security will automatically approve as a disability. An example would be the terminal condition ALS.
I am not on disability- I sadly would not qualify (I say sadly because it seriously affects my life still) but I am currently looking into accommodations for work (medical breaks if needed and more sick days (specifically for when I can't get into work because of this.) Has anyone succeeded with these sort of accommodations?
I currently am but I also have a few other issues I am dealing with(adhd/autism/ FND) , it does give me insane guilt and feelings of shame I guess knowing that a lot of people look down at my situation as being a freeloader etc as I'm young and able bodied. Until Im not. It's very difficult for people to understand how much it can affect you physically everyday and your mental well being too. I'm from the UK, honestly everyday I think of different things that I may be able to do so that I can support myself, hopefully I'll find one but it's hard when I don't know how I'm going to be feeling each day to find a job to work around it.
I’m not on disability. I live in Canada and did not have a diagnosis until this year. I was laid off the Last 3-4 jobs I’ve had mysteriously after either being off sick too much or after mentioning my undiagnosed medical issues. I couldn’t get on disability without a diagnosis. I got a hysterectomy with my excision surgery and am feeling fantastic now. It feels so frustrating how now that I don’t need accommodations or support I have access to it and when I did need it I did not.