Employer not being supportive about endometriosis / invasion of privacy

[BlueMorpho13]

Hi all,

I was wondering if anyone has any advice on how to approach having an employer who is not supportive of endometriosis / treatment, and consistently asking for a lot of detailed medical information?

I’m 29, diagnosed with endo at 25. I had a surgery almost immediately after being diagnosed (before working for my current employer) and then last year my endo became unmanageable again. I have just finished 6 months of a medically induced menopause (GNRH injections - which were awful in terms of side effects) and had another operation 2 weeks ago. I work in investment banking, very high pressure job and really long hours.

I’ve managed to maintain those hours with only a few weeks of medical leave overall (much less than I actually probably needed) and have had no drop in performance whatsoever - in fact I was recently promoted. However, I have been working more from home than the average employee (which is completely fine because we only need our laptop).

Yet my employer is being really difficult about working from home, and putting a lot of pressure on me to come into the office more. Moreover, the most concerning part is the level of medical information they keep asking for and how many “meetings” they keep setting up to discuss my medical condition.

In the beginning I was happy to explain that I have endometriosis and what the treatment is that I’m undergoing, but now it’s become ridiculously invasive with no regard for my privacy - sensitive emails are being passed on without my permission, and they keep asking more questions, down to very specific details. E.g. what is the doctor doing in the operation, why do you need it, why are you having the coil fitted, what other medication are you taking and what are the side effects you’re experiencing, why are you in a medically induced menopause, how does this help with the endometriosis, can you explain what endometriosis is and how it impacts your life, is it a lot of bleeding, how bad are the cramps, does it impact your fertility, etc. I’ve answered every question despite feeling very uncomfortable and the response is always “thank you but we need more information”.

I’m quite sure this is illegal and I’ve been manipulated into responding to these questions out of worrying that my job security is under threat, but I spoke to my doctor today for our post-op and he was absolutely outraged - he said they didn’t need to know anything beyond that I have a “condition” that can impact my ability to work and where I can work from.

I’ve felt so disrespected and frankly embarrassed having to answer such personal questions, and they don’t seem to show any sympathy towards the fact that a) endometriosis itself is debilitating and b) menopause treatment and surgery are even more debilitating and c) this is all linked to women’s health / reproductive health which is not an easy thing to talk about at all. It’s a sensitive and deeply personal topic.

My doctor has said I need 6 months now to see how my endo responds to this last step of the treatment and I’ve said to my employer that I therefore may need to work from home more than normal for the next 6 months (everyone works 4 days from the office, I’ve asked for 2-3 days in office) - their response was to say that they’ll give me 3 months and then expect me to be in line with every other employee. This obviously isn’t in line with what I requested.

I also think having endo alone, whether I have just undergone treatment / surgery or not, is enough to require some more flexibility on work from home vs not - so in actuality I would be looking for more flexible working even beyond 6 months.

I am considering seeking legal advice as I feel like they have really crossed a line in terms of the amount of information they’ve asked that I share, as well as their inability to be more flexible - luckily, most of the correspondence is via email. If anyone is a lawyer or has any experience in this area, I’d really appreciate some guidance. And if anyone has any tips on how to manage employers, I would really appreciate this too.

I have been made to feel ashamed for requiring more flexible ways of working but I didn’t ask for endo and I’ve done all that I can to ensure that my work isn’t impacted. I pride myself on my work and yet I now no longer enjoy it and I’m quite anxious about it all the time. I’m not in a place where I can switch jobs right now and feeling really deflated about how I’ve been treated. I really don’t want to share any more medical information and it’s psychologically taken a toll to be going through all the pains of endometriosis, GNRH injections and surgery whilst also having to justify myself every step of the way.

Thank you in advance for any help / advice

[Amyrebecca246]

Hi, sorry to hear that work aren't being good with you. The only thing I can suggest is joining a union, do it ASAP so if/when things happen you will be covered. Also keep records of what they are doing/asking etc as it will provide evidence down the line.

[BlueMorpho13 in reply to Amyrebecca246]

Thank you for the suggestion! Will look into joining a union ☺️

[Lofty1589]

Endo can qualify under the Equality Act as it is a long term condition that affects you negatively. Under this, it is not unreasonable to expect/request “reasonable adjustments” such as flexible working. If your work has Occupational Health or can refer you to one, they can write a report about what you need and your work should implement it.

I’m appalled that they’re being so invasive about your medical needs/history. You can guarantee they’d be majorly less forthcoming about any of their issues should they be asked about them. I’m so sorry you’re dealing with this.

[BlueMorpho13 in reply to Lofty1589]

Thanks for this! I didn't know that endo can qualify under the Equality Act and we do have Occupational Health - so I'll definitely look into this / ask them to write a report.

You're completely right - knowing the personalities of those involved, they would not be forthcoming at all if the tables were turned. Thanks for giving me that perspective, I didn't think of it that way.

[Lofty1589 in reply to BlueMorpho13]

From the Citizens Advice website: “The Equality Act says a disability is a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day- to-day activities.”

Occ-Health should help in making reasonable adjustments. It’s certainly not unreasonable to request flexible working - especially if it means less time off sick!

Good luck!

[BlueMorpho13 in reply to Lofty1589]

Thanks very much!!

[Rjb_88]

Hi! Endo can come under the Equality Act but only if it ‘has a significant impact’ on your day to day activities, every day for 12 months or is expected to for 12 months, despite treatment. Does your employer have an occupational health provider that you could see? They could do a report which would then inform your employer and they can give their view as to whether your condition is likely to be considered a disability and so a protected characteristic, they can also recommend steps your employer can make to help. Your employer is compelled to make reasonable adjustments as far as they can if deemed a disability and working from home more really doesn’t seem unreasonable! They can disagree with occupational health but that isn’t usual.

Separate to that I would also raise a grievance with your HR team explaining that you feel the questions are invasive and you have given all the information you can, and the impact the constant questions are having on you. I’d expect them to do a return to work meeting after you’ve been off work and do regular welfare reviews but it does sound like they’re being excessive. Have you been offered to bring a colleague with you to the meetings and do they take minutes?

I’d also then submit a formal flexible working request around working from home so you have something formal agreed.

If you want any advice then drop me a message, I am a HR person so more than happy to help as I deal with this sort of thing everyday!

[BlueMorpho13 in reply to Rjb_88]

Hi! Thank you, this is really helpful! Endo has impacted me significantly since the age of 15, even with treatment, so I do think I'd qualify for the Equality Act (I didn't even know this was possible). I'll look into it and Occupational Health. I'll also set up a meeting with HR, ask for a colleague to be in the meetings and take minutes (this hasn't been offered) and then submit a formal flexible working request. Thanks again - gives me a full plan of action!

And thanks for offering HR advice - I'll see how things go and reach out if I need to - really appreciate it 😊

[Lex4]

I’m so sorry (and outraged!) to read your account. As lofty said, while Endo isn’t automatically classed as a disability, if it (if left untreated) would prevent you from carrying out normal day-to-day activities (not a term that’s defined in the act) you have a disability relating to a long term health condition. This is one of only two categories in the act (the other being pregnancy) where it’s understood that there is some potential for change in your condition.

If your endo meets this threshold (not everyone’s does) you are entitled to seek ‘reasonable adjustment’ from your employer. They are entitled to ask for sufficient information to understand the adjustment you need (sounds like they’ve overstepped that mark - an example would be giving them information about pain being worse at points in a cycle, of having irregular periods and associated pain that made a need to take time off or work from home unpredictable), and they can ask to arrange for an independent medical assessment, but all of that would be covered under your right to confidentiality.

Which brings me to the second issue - this is a clear breach of ‘sensitive personal data’ under UKGDPR. You can report this to the ICO (they even use a similar scenario to yours as an example of what a data breach looks like).

I would recommend you do three things (all are free):

- contact the ICO (information commissioners office) to explain what’s happened with the forwarding emails (the severity of the breach will depend on who it’s between (ie you would expect traffic between HR and your line manager, but the issue there is the detail you’re being asked for, whereas if there’s broader discussion or sharing, such as your line manager telling other team members about your condition, that’s much more serious)

- call ACAS, your workplace is seeing intrusive and unnecessary information and seems to be pushing back against making reasonable adjustment

- it might also be worth looking for a disability charity who has a helpline I work in the arts and events so Attitude is Everything is always my go-to source of information, but there will be less sector-specific equivalent

I hope that’s helpfu, and I know it’s exhausting to deal with this when you’re in pain, but you are not being properly treated by your employer and I hope it’s reassuring to have other people confirm that for you x

[BlueMorpho13 in reply to Lex4]

Thank you so much! Really helpful clarifications / background info on the Equality Act and what the process would look like. I'm definitely going to look into this and ask for Occupational Health / HR to get involved too.

The legal information and resources you provided are also so valuable - I would have had no idea where to start! I'll do all three things you mentioned, thank you ☺️

And yes definitely feeling quite exhausted to be dealing with this on top of the physical impacts of endo and treatment, but it really is so reassuring to see that I'm not being too 'sensitive' or anything like that around how my employer is treating me! Thanks again 🙂

[bluebug]

Personally I would go and see an employment solicitor to seek their advice now in case the situation escalated

Then request that you are sent to occupational health.

Unfortunately the onus is on you to speak up to your employer and tell them you have a disability but you are not going to discuss your treatment with them as they are not medically qualified.

[BlueMorpho13 in reply to bluebug]

Thanks for the advice! I'll look into seeing an employment solicitor - seems like unfortunately that may be the way to go now.

The fact that they are not medically qualified has been a big issue for me because no matter how many questions they've asked / how many times I've tried to explain to them what endo is, the symptoms, why I need certain treatments / medications and the side effects, they continue to say that they don't understand.

Thanks again ☺️

[ccfd9]

Stress is a BIG factor of endometriosis, it is a major trigger. They are putting excessive stress on you and you need to document each event, who said what and when. You will then have grounds for constructive dismissal and can sue them for thousands. Obviously this will add to your stress and you loose your job, but you may draw your boss to this possible outcome. Have you an HR department? Consult with them, they may be able to pressurise your boss. You need to check your contract and see if office attendance is written in and how it is worded.

Have you looked at your diet? There are ways of easing stress through mindfulness or meditation. But many people get relief from their endo pain by following a gluten free diet and an anti-inflammatory diet, see endometriosis.co.uk

[BlueMorpho13 in reply to ccfd9]

Thanks for your comment! Yes I've noticed my endo is really strongly impacted by stress - ironically I think my endo has been worse since starting this job because of the level of pressure they've put on me to perform, and they've only added more pressure since finding out about my endo. I'm looking into consulting with a lawyer and seeing what my options are - I don't want to lose my job but like you said, it may be heading that way anyway and I'd rather be in control if that happens. I'll also speak to HR - my boss is a partner at the firm so almost 'untouchable', but perhaps they can help more than I'm aware!

I have been working with a nutritionist who's been great and provided lots of info - including suggesting going gluten free / following an anti-inflammatory diet. However with how stressful work has been and the long hours alongside endo / medically induced menopause and surgery, I've tended to rely on 'comfort food' a lot these past few months. But all the support on here has encouraged me to try and focus on my diet again - thanks!

[Avourneen]

I'm so sorry to hear you are being treated like this. I think because endo doesn't show visibly lots of employers just seem to think it is basically someone making a lot of fuss about period pain. I can't even get my own family to understand how debilitating it can be.

It is so hurtful and stressful to be regarded with such suspicion and treated so unfairly.That of course will increase the level of stress you are under and make your condition worse.

However your employers unlike people's families have to act reasonably and within the law. It sounds as if they are not doing this. There are some really good pieces of advice on here, I would also suggest keep records of everything, communicate in writing via e mail not text with your employer as much as you can so they can't end up saying they didn't say these things, keep a record of dates and days where these things happen and go to a good employment lawyer.

I would go right away, an initial consultation won't be too costly and then they can telll you what you need to do to protect yourself and what steps you might have to take if this carries on.

[BlueMorpho13 in reply to Avourneen]

Thanks so much for all your kind words and support! Yes I think the fact that endo isn't visible is a big part of it - one of the main people involved at work in this situation has even said "but you never look like you're in pain and you're always positive and smiling". I'm sure a lot of women in this group can relate to having a high pain threshold and getting good at 'hiding' endo - but that doesn't mean that we're not suffering! I have the same with my family (and both my parents are doctors) - sorry to hear you have it too.

You are spot on - it's the feeling of being treated unfairly / with suspicion that have caused a lot of hurt and stress. And it has definitely made my endo worse - I have had times where immediately after a conversation with work about this my cramps / other symptoms come on and I'm bedbound within a couple of hours.

Very true on employers! The advice on here has been amazing - will definitely action all of it 🙂 And good idea to keep records of everything / communicate by email.

Definitely going to reach out to an employment lawyer - worth an initial consultation at least.

Thanks again!

[JOSANDY40]

Well. Their behaviour is ridiculous. Unfortunately Endometriosis cannot be fixed but put into a semi sleep mode. If had Crohn's disease ot would be similar with time off. Perhaps IBD as well. Once I was on Zoladex over a yr my symptoms did improve. I started on 3mthly implants. From about 26yrs to 38yrs it was pretty difficult. Stress doesn't help either. I would stick out and hope they back down with enquiring but long term you may have to take a local job or one you work from home or change career.My employer got werid with me. As I kept on going to toilet when I did have periods as the flooding would come through clothes, sometimes I changed clothes which brought on questions..

Large companies can be difficult.

I managed to stay in work til I was 40 ish. It was very hard, no social life, exhaustion, bed by 8pm. Had my main meal at lunchtime.

I wish you the very best. If you can Do the job, put the hrs in try to be available in the office. Even for 2pm to 6pm.

xxxxx

[BlueMorpho13 in reply to JOSANDY40]

Thanks for your comment / support! Even though I've explained that there's no cure for endo - they keep asking when I'll be 'fully better' - so frustrating.

Thanks for the info on Zoladex - really helpful to hear about your experience with it although I'm sorry it was difficult.

I'm considering my options around either sticking it out or like you said, changing job / career to something with less pressure and more understanding.

One of the reasons why I'm pushing to work from home is exactly what you were saying about going to the toilet often, bleeding through clothes, etc - these are quite common for me and of course embarrassing if I'm in public. Sorry you had to go through this! I completely relate to it being hard, no social life, exhaustion, etc. I'm the same where my life feels like work, dealing with endo, and sleep only. I don't have the time or energy to focus on other things like a social life right now but I'm hoping it gets better.

Thanks again for the advice and wishing you the best too! xxx