I am almost 3 weeks post-surgery (second surgery). Today at work, my manager said that I am “complex.” I’ve had a hard time with my health my whole adult life (and teenage really), finally getting an endo diagnosis at 34 years old. The past 18 months have been really awful, with a miscarriage (after trying for 3 years), a horrendous knee injury and not being able to walk for 3 months and not properly for 12, and my Nanna who I was really close with was hit by a car while crossing at a pedestrian crossing and after a week in intensive care, passed away. All of this happened within 4 months. I feel so guilty because my manager said that during all this, I’ve lost my “zest” and I’ve been disconnected from the team. It made me feel nothing but worse, because yes, dealing with a constant, chronic illness is complex. And dealing with a lot of constant loss is hard and I think natural to make you withdrawn and not yourself? All this just made me feel so guilty, and like I’ve tried so hard over the years to cover the fact that I constantly feel unwell and struggle, but this made me feel like I’m letting people down and I’m just not enough. Complex. A burden. Anyone else struggle with endo making you feel so guilty?
Feeling guilty. Can anyone relate? - Endometriosis UK
Feeling guilty. Can anyone relate?
I’ll be completely honest, this makes me terribly sad and angry.
Firstly, I’m sorry to hear that you have gone through so much. Secondly, you absolutely should not be marked complex and made to feel guilty!
Everyone has issues, some more than others. But to give you that label with such a negative connotation when all of the impactful things happening to you are completely out of control is really damaging.
Is your manager asking how they can support and help? As a manager, who suffers quite badly day to day with stage 4 endo and adeno, I would never dream of adding that additional worry on someone who is quite obviously trying their best with a shitty hand they have been dealt.
I am also struggling with the level of enthusiasm/positive attitude I previously had for my role. As a complete control freak, I took tremendous pride in being the person to lead proactively, and conquer all (as cheesy as that sounds). But now, as long as the work is done, and my team are happy I have to take that as a win. And fortunately have a manager who can see I’m not 100% and understands the reasons, and wants to support until I can get back there. Because I will eventually get back there and so will you!
DO NOT BE MADE TO FEEL GUILTY. I refuse to and you should too! You’re showing up every day and that in itself is more than enough some days! Especially whilst we are all stuck waiting years for diagnosis, waiting years for treatment, waiting for gyne after gyne to find something that works for each of us as individuals as it seems it’s not a one size fits all disease.
Turn that guilt into anger. Fight for yourself, fight for the right to navigate this disease as best you can, and fight for the support you need and deserve from them as a bare minimum decent human beings and employers.
Sending love and strength! And… apologies for the rant 🙈🤍 xxx
Thank you so much. That is so validating and reassuring. In terms of if she is asking how she can support or help, not really in relation to what I’ve mentioned. But there is another situation where I was successful for a Team Leader position but staff weren’t happy about it (it’s a new position and they don’t want a Team Leader) so now it’s not going ahead. She acknowledged today that that is another loss and has been supportive in that situation, even though I still can’t believe it has come to this. That is seriously causing me to lose my mojo and lose energy towards my job too (this is only recent).
That is incredible that you are a manager and have endo. That is incredibly validating to hear that you, as a manager, think that a manager should be supportive and ask how to help. It rather makes me feel like I don’t deserve to work, like why should they have to put up with me? Even though she said that despite my circumstances it hasn’t affected my work.
Can I ask, how do you manage to be in management and have stage 4 endo? I was diagnosed with stage 3 and have so often felt that management is not possible for me because of my health, even though I would love the opportunity. How do you manage it all?
Thank you so much again for your understanding and response xxx
I guess my circumstance makes a lot of it more manageable for me. I have a remote team, some of which are based overseas. So it means I have the flexibility to be at home when needed.
I’ve only just found out what’s going on with me (it’s technically still suspected I guess) and am currently waiting for my first surgery so, I can’t really know how that will affect my work. It is a huge worry but I suspect it won’t be a quick turnaround given I have multiple organs tethered together and significant bowel involvement. At present I’m taking cocodamol a lot due to severity of pain, it absolutely impacts my mental capacity and how switched on I feel but I always do the best I can, and treat my team with understanding and empathy. Support where needed. If I’m having a really rough afternoon/morning I move meetings where possible and just find a way to make it work, at present I’m managing that’s not to say it won’t change. I’m literally seven years in but at the start of my treatment journey, it’s possibly easy for me to say at this point.
Some days it is incredibly hard. Some days I get frustrated and upset that I’m a different person that I once was. Sort of like I’m less capable but actually that’s not the case, just hindered a little. But I’m absolutely too stubborn to feel guilt or apologise for it. Chronic illness is rough, people who don’t suffer don’t always understand, I’m trying my best to educate those around me on Endo/Adeno to make sure others feel they can discuss/be accepted and not judged when they’re suffering with anything.
You absolutely deserve more support. Maybe it’s time to educate those around you too. Xx
Thank you so much, you have been really helpful 🤍
That's a very unsupportive attitude from your manager! Of course you can't focus at work with so many traumatic events happening. I think they could be a lot more empathetic. It's a chronic condition - think should be recognised by your work and they should support you and realise that it's not easy to deal with and the mental (and physical) load is immense. Could you reach out to someone else at work to get more support? I definitely have felt guilty because of endo - as the symptoms interfere with my focus at work, I miss time due to surgery and appointments and I also just find it difficult to perform when I'm managing the latest round of IVF/surgery etc. I'll have to take off time for another surgery soon and it's hard to juggle with work demands. Definitely understand how overwhelming it can be. x
Do you think so? It’s honestly how I feel, it’s like she was speaking directly into my worst fear. Confirming it. I try so hard to be normal 😩 how do you think it could be recognised by my workplace? Do you mean more broadly by HR? How do you manage your endo in your workplace?
Oh goodness, I’m about to start IVF soon too. I’m so nervous. I hope it is all going well for you xxxx thanks so much for your response xx
I think it's terrible how they are just assigning labels like that. It shows a complete lack of support and empathy. I've been upfront with my manager that I have endometriosis (I'm stage 4), I explained the severity of the condition and some of the supports I've asked for are (1) working from home or coming in late when I've a flare up (2) telling him in advance of meetings if I'm having symptoms or feeling emotionally exhausted after a med appt and may need to take a break/reschedule (3) coming back to the office gradually after surgery (4) taking time off for recovery/ appointments etc. He has been very understanding and has never refused the flexibility/time I need. But I would definitely approach my HR team to ask them to make adjustments to accommodate for my symptoms if I felt that my manager wasn't supporting me. It is a chronic condition after all! And you have been through a really difficult time. Hope this helps.
Yes I'm starting round 4 of IVF soon! Good luck, I hope your round goes well. I've had three embryo transfers but none have been successful so far yet unfortunately. The Fertility Network page is quite good for support on IVF too - there are lots of endo related threads there too.
Hello
!!!!!!!!!!!!!!!!!! How dare your manager say that to you!!!!!!!!!!!! Quite frankly I think you’re pretty amazing to have dealt with all that and not only still show up for work but be able to come on here and share that all. You are not complex you are not a burden you are just a very brave and strong woman who has had a very unfair amount of sadness and trauma come to her life all at once. Sending you much support hugs and love x
Thank you so much 🤍🤍🤍🤍
I have a similar experience unfortunately, I'm a qualified person working for local government and have had an awful 12 months. My marriage almost ended which just made my anxiety unmanageable so I ended up being signed off work for almost 4 weeks, I went back and felt much better mentally then at Christmas the whole family had a bad bout of COVID and ended up in bed, even my children! I went back to work for a couple of weeks then I picked up cryptosporidium from somewhere and spent the next 2 weeks unable to be too far from a bathroom and on iv fluids in hospital. I went back to work and was put through a formal absence procedure. All of my absences have sicknotes of course and I do understand the value of a process but when judgement could be used before going down that route it added unnecessary stress to my situation. The day of my absence meeting I got my letter giving me a date for my laparoscopy and posterior repair surgery........ My gynae had already said this would be around a 4-6 week recovery period but after waiting 18 months for the surgery I had to accept the date.
I ended up trying to go back to work after one week because frankly I was worried for my job and had been told how much of an extra burden I'd added to the rest of the team etc etc. I picked up a post op infection, went to see the GP and got a huge telling off for being at work. They signed me off again but I'd only take a week through fear. I'm still struggling with pain and tiredness at week 5 post op but I'm back full time and being constantly reminded about the amount of work I have outstanding due to my poor start to the year.
I have no advice,I could probably do with some myself🤣 but you aren't alone and this kind of treatment affects all levels of women in the workplace. Health should not be a factor for capability to manage etc, what it gives you is a higher level of understanding to help better support your team.
Oh I’m so sorry to hear all this! What a terrible time you’ve had 😔
Funnily enough, I work in local government too. I’m terribly sorry you got put through a formal process, is it all working out alright now?
My husband told me, “you’re not complex, the circumstances you’re dealing with are” so I guess that’s good advice to give back to you! And what I’m about to tell you, I should take myself (why is it so much harder to be kind to ourselves and apply our own advice?!). Endo is not your fault. You can’t help that you have a chronic condition. I bet you do the best you can and your best is great because you’re great, because there’s only one “you.” You are more than your condition, it does not define you. It’s something you experience, it isn’t who you are 🤍
I love these responses! I love women supporting women. 💛 . I'd get HR involved in this one if you can. Or your union if you gave one. Get that meeting recorded on paper and let him know that you will not be treated like that. "Lost your zest" I'd love to be in the room when HR play that one back to him lol x what a knob. Look after yourself. Your sympathetic nervous system will be shot with everything that's happened. I'm so sorry about your nanna and all you are going through. 😔 Endo should not make you feel guilty. It's an incredibly painful disease. I'd print some stuff out for him to read. (I'm presuming it's a man although women have often been incredibly unsympathetic towards me over the years). Good luck xxx
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