Making a Living

Hi there,

I had an operation to remove the endometriosis in April. If anything it has made it far worse and my condition has been debilitating. I lost my job as a result which is gutting as it was only due to absence.

The stress has only made things worse and now I feel I have lost the tenacity to go for interviews. Currently I would find it impossible to work full time and I couldn't commit to part time as often a bad episode lasts for up to a week. I would like to earn a living in spite of this affliction.

So my question is how exactly can you juggle the two.

Thanks :)

17 Replies

  • I am not sure. I am having issues applying for jobs because I KNOW I have a disease that will make it unhappy for other co-workers. I can't apply for jobs with very few people, because who will pick up the slack when I call off? I am from the United States, and out here we can get FMLA (Family medical leave). If your dr. says you have a medical condition and fills out appropriate paperwork, they can't fire you for call offs due to your endo. It's a big pain to keep up, as my job requires it to be updated every 6 months. I don't know if this is where you are, but it's been a life saver for me this past year. Otherwise I would suffer so greatly at work, and when I finally called off, I would get in trouble.

  • I will look into my rights in the Uk I'm not sure they are really considered as I found out from my last employer they can sack me on the basis that I physically can't do the job (even though I could 40% of the time).

    Thank you for your reply :)

  • Hi roomarcus, I am sorry to hear you are caught in such a difficult place and still suffering. Can you maybe think of something that you can do from home that can be flexible around your health? Are you arty or do you feel like re training in something? Listen to your heart and take the time you need to heal. Lots of relaxation and doing the things you love will often lead us into things that are more true to our nature and that can be a wonderful healer.

    Take care of yourself!


    Jen xx

  • I am arty, I would just need to develop an idea in which people would buy into I guess lol.

    My confidence is so shot but your right things normally find a way of working out.

    Thank you for your helpful response :).

  • Have a look on Etsy and folksy to get a feel for what's out there and it can be a good way to sell your things from home too. Hope this helps.


    Jen xx

  • Hi! I feel your pain. This past year has been horrible, my attendance at work is horrendous. I was sent to occupational health because of my attendance and it has left me scared. I'm looking for a job with better hours as my working week is Tues - Sun and the journey is long. If I don't find one I'm going to ask to go part time and if they don't let me I am going to leave. I'm looking into starting up my owm business, so I have something to fall back on. Etsy and Folksy are the best places to sell but don't forget about using face book, pinterest etc. I'd don't know what you can sell but if you can offer commissioned pieces you can charge a bit more.

  • Hi, I'm sorry to hear your having a hard time at the moment, I just wanted to reply and say the same thing happened to me. I was offered a new job but when I was honest and told them about my endo they said they had changed their minds and wanted someone who was more flexible! ( I told them I couldn't commit to full time) I got another job and again was honest from the start about my endo with which my boss was fine until I had an episode and needed time off. My boss made me feel so bad I cried and quit! My point is that after months of feeling sorry for myself and not knowing what to do with my life, I've gone back to college at the age of 38! It's a part time course and after I'll be able to work from home at times that I know I'll be well enough. I promise you there is hope and an answer for something that will work for you, stay strong, it's not easy but things will get better. Take care xx

  • In short, life can be a right b*tch! I'm so sorry to hear you have been through this too roomarcus, and yes its so stressful, painful, hurtful that ppl dont get it and robs us of our confidence when we are sacked due to illness.

    I lost 2 jobs within space of 3 months and felt a complete failure. One job I didn't mention illness and the second I did....don't know what's best to do sometimes. Im a trained primary school teacher and for past 6 years have been tutoring students at home in literacy/maths/ and guitar which is keeping me in some form.of work. Everyone I go to now, knows and is educated about endo and are supportive when I need to cancel or rearrange because of pain.

    What kind of job were you doing? Really hope you can work something out, but as others have said, you need time to heal too. Nothing is more important than your health. Massive hugs from the north east, Annie xx

  • Hi "Roomarcus",

    This is an issue that REALLY MAKES ME BOIL! How dare anyone pick on a person for being ill - it's not as if you asked for it to happen!

    Employment Law strikes me as a bit of a "minefield". It is very contradictory and hypocritical. According to UK law, employers and colleagues are NOT supposed to be able to discriminate against a person due to disability. However, in reality, IT HAPPENS EVERY DAY. The fact is that they find "loopholes" ...

    For example, if a disabled person applies for a job, and the employer does NOT want to employ a disabled person, then they CAN do this. True, they CANNOT admit that they refused to hire due to disability. Instead, they simply say the person did not have the "right qualifications", or the "right experience". This is a euphemism - it's clearly a lie... but it is a good excuse. It makes everything look "legit".

    Ditto the situation at work. True, employers and colleagues are NOT SUPPOSED to bully and discriminate against disabled staff... BUT THEY DO!. If somebody is sneaky enough to hide the fact that they are picking on a person due to their disability, then they can try to get away with it. This is why people who are discriminated against often find that they are targeted in other ways too - the disability is obvious (and the cause of the bullying), but the person is told they are being "disciplined", or that their "work is not up to scratch". They may find themselves facing false allegations of misconduct. They may be constantly reprimanded for absences, or told only to attend medical appointments "outside working hours" (which for many is impossible). Put simply, if somebody is nasty enough to want to pick on a disabled person, then they WILL try to find ways of doing it.

    O.K., that is all the negative stuff out of the way. Sounds horrible, I know, BUT maybe it is a case of needing to be aware that there ARE prejudiced, nasty and discriminatory people out there. YOU do NOT need people like these in your life.

    Perhaps you need to "flip things on the head", so to speak? Right now, you see Endo as a pain, as a hinderance... What if you saw it, instead, as a way of working out your priorities in life? As an opportunity to look at your goals, your strengths, weaknesses, interests? As a chance to evaluate the relationships you have; to look at who are your good friends and supporters, and to cut from your life the people who make you feel less than good, or worthless, or unhappy?

    Sometimes, when we hit a bad point in life, we REALLY get to see things as they are. We get to find out who will stick by us, and who will "stick the knife in"! We also get to know something new about OURSELVES...

    I have Endo. I've had 4 surgeries to date... and YEARS of frustration. Believe me, it's altered my perspective. I now know that some people in my life were utter poison. I know that I am tougher than I look, and can put up with a lot. I know that I can work through pain, and still achieve better than some people who are not ill at all. I know that I do not give up. I know I can, with a few alterations, still make my hopes and dreams reality.

    Living with Endo is all about NOT QUITTING! If YOU have got this far, then you are stronger than you believe. THAT is a good place to start.

    Always remember that the people who made you feel down might, one day, find themselves in a worse position than you. What goes around, comes around! Meantime, concentrate on YOU. It's NOT selfish - you deserve to give yourself space and time to heal, and to adjust. Having surgery is not pleasant, and it takes your body time to recover. Don't feel guilty, or a failure - don't push yourself too hard. Understand that EVERYONE who's been ill needs to recover. Anyone telling you otherwise is a fool!

    Use this time wisely. Look at what you are good at, what you have achieved so far. Is there anything there you can build on? What skills do you have? What qualifications? In what ways can you use them? Perhaps there are more opportunities out there than you think...

    a) Some good employers don't moan about disability - they don't see it as a problem. They are happy to take staff who are qualified and able to do the job, no matter what. They are accommodating and supportive. They may offer flexi-working, or working from home. They may allow job sharing, or part time work. Employers like these concentrate on your strengths, not weaknesses. They DO exist.

    b) You could work for yourself. If you have certain skills, you could use these to start your own business. Not easy, admittedly, and it takes dedication. However, some people do manage it, and make a success.

    c) You might like to think about studying. Many colleges and Universities are open to disabled people, and offer assistance to help them study. Undertaking a course of study might help you regain lost confidence, and learn new skills, both at the same time!

    These are things to consider. It may take time, but do your homework! There are places where you can seek advice:

    1. ACAS give advice about employment law, and may be able to help you discuss options if thinking about a return to work. Their website:

    2. Another avenue of help for the same issues is the ECHR (Equality and Human Rights Commission) who can tell you about any rights as an employee. Their website:

    3. You could make an appointment to speak to a career guidance adviser, to discuss options and seek advice. To get more information about this, the website is:

    4. If considering starting your own work from home, then advice is available. There is a service called Business Link. For this, the website is:

    If considering study, maybe speak directly to local colleges, etc. or get a Prospectus.

    Sorry this was such a long post. Hope something here is helpful, though. Wishing you all the very best...

    E. x

  • Thank you, all the comments have been pretty spot on.

    I will be sure to have a look at the websites you have posted, that was extremely helpful of you! :)

    Upon my diagnosis my partner of five years left me, that's one thing I can be grateful to my endo for lol (silver lining).

    I'm now looking at my second operation within a year which is far from ideal. So I think study may be the way forward.

    Thanks again, very much appreciated.

  • And what is terrible, we WANT to work. There are so many people who try and abuse the system and get welfare or free help, and here we are trying our very best to be a part of society, and we get in trouble.

  • As horrible as it sounds I'm pleased to hear I'm not alone and others understand what I am going through. I've had a meeting with my manager today who said that I'm not able to carry out the role I'm paid to do and so the next step will be a capability review. Ultimately it may result in dismissal even though I've worked hard there for over 10 years and have not chosen to develop this condition. Surgery isn't an option at the moment as we are having IVF so I am trying to manage the condition as best I can. I feel as though I'm being backed into a corner and have few people to talk to as we have made the decision to keep the the fact that we are have fertility treatment between ourselves and close family. I hope everyone else has had a better day at work xxx

  • This is kind of a general reply to everyone in this thread, because there are just so many relevant and pertinent, astute comments to address, it feels wrong to respond to one person in particular...

    I guess many of us here feel "in the same boat". NONE of us asked to get Endo, it just sort of happened. Now, we have to deal with it as best we can.

    And, sadly, it can sometimes feel like there is very little help to enable us to deal with it. Lots of people can be very ignorant when it comes to trying to understand a disease that they cannot see, and have rarely heard of! Friends, family, employers, colleagues, classmates, peers... all kinds of people can be extremely ignorant when it comes to understanding Endo, and the effects it has. Often, we are on the receiving end of that ignorance - why? Just because fate unfortunately decided to give us Endo! NOT because we are lazy, or stupid, or useless, or rubbish people (which is what so many of those who are negative towards us seem to want us to hear).

    People who have long term health problems/disabilities, including Endo, have a LOT to contend with in life. We have to do ALL the things that most healthy people take for granted - such as study, or work, or look after a family - whilst at the same time coping with the effects of an unwanted illness. Now, I reckon THAT takes a heck of a LOT of strength, courage and ability... so, we are sure as hack NOT useless. We have to cope with an emotional and physical "rollercoaster" that may include surgery, pills, IVF, infertility, pain, fatigue, side effects from treatment, menopausal symptoms... Yeah! THAT is what living with Endo means... Can anyone WITHOUT Endo really say that THIS is something they would want?! Somehow, I doubt it!

    My trick for coping, nowadays, is to imagine any person who is nasty to me getting put in MY situation. I'd love to see THEM cope with Endo, and live MY life. I'd love to see THEM try to do Postgraduate Study, whilst having major surgery; or hold down a full time job, whilst suffering excruciating pelvic pain, fatigue, and upset stomach. I'd like to see THEM try to go to the gym when fatigued from anaemia; or enjoy a night out with friends when actually THEY feel tired, achy and nauseous... Oh yes! I'd LOVE to see that... And I have a sneaky feeling that THEY would NOT cope any better than we do (if they could cope at all).

    You see, it's easy for somebody who is ignorant to criticize, when they don't understand what we are going through. When they don't know the reality of our lives. WE know that reality. And... despite everything, we are STILL here... coping, trying to get on with life. Trying to work, trying to study, trying to start families. Trying hard. THAT is something to be very proud of.

    There is an old saying, "you don't get anywhere without trying"! So, ladies, I say to all of you KEEP TRYING. Maybe things aren't always perfect, or even half decent, at times... But, if you have the strength not to give up, then who's to say you can't have what you want in the end? Whether you want a career, better qualifications, kids, a new relationship, weight loss... anything... WHAT is to stop you trying for it?

    Remember this... SOME people give up too easily in life. Some people who are fully fit and healthy may NEVER have achieved in life the things that WE HAVE, despite our Endo. So, rather than putting ourselves down (which, by the way, there are enough people out there already trying to do that), we should perhaps STOP... TAKE A GOOD, HARD LOOK AT OURSELVES... RECOGNIZE OUR ACHIEVEMENTS AND ABILITIES... ACKNOWLEDGE OUR WEAKNESSES (AND THE FACT THAT NABODY ELSE IS PERFECT, EITHER)...


    All the best to all of you. May fortune smile on the brave.

    E. x

  • Wise words

    Thank you x

  • Hi there, im really sorry your going thru this but as you can tell you are not alone !!!

    I think we all struggle with any type of activity thats regular.

    Im a bank support worker so i work when im well & dont or say im not available for work when im due on. I dont let anyone down, i dont get dragged to occi health for sick leave . Minimal stress ! I simply dont work that week or cancel at least 24 hrs ahead cos god knows i have period pain n nausea n all sorts to warn me im about to start !

    Ive successfully worked like this gor over 10 yrs !!

    Hope that helps !

    ( bank or relief means as & when needed )

    Big hugs xxx

  • I'm lucky in a way, at the moment, I work for my family. Which is good in some ways, like I can have time off when I can't work. But bad in that, if I'm not there they are one worker short, so everyone else has to do extra work, and I'm feeling guilty because they have to. I also get a low wage, so in the future I would love to get another job earning more, but it's a waste of time at the moment with how I am with the endo!

  • Sorry to hear about your job loss roomarcus.

    I am always worried about taking time off, people just don't understand the illness. I'm off today having had a terrible night! Sleeping just 3 hours and now exceeding my painkiller daily allowance and its not even midday!!

    Retraining or developing a skill to work for yourself is a good plan, if suitable. Its a shame your previous employees weren't more understanding.

    Best of luck to you and chin up!

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