How do you get work to understand?

[MeggyCharlie]

Hi All,

So just to give a bit of info, I work as a Team Leader for a restaurant, and since my surgery two years ago, I had no flare ups or any trouble with my endo until April last year. August last year I ended up having a really bad flare up and I was off work for three months nearly. I ended up in A&E twice and had several doctors appointments, I went back to work in November and sat with the manager to discuss what needed to be done in order for me to continue to work there.

We agreed that I would only work my contracted hours which are 33 a week and not the 50 plus that I was doing as overtime before, we spoke about how I needed to be given a clear picture of what my job role is(as this changed in November adding more responsibilities). Work is always stressful and has been getting worse over the past year or two.

I had two small flare ups at the end of January and earlier on this month which were bad enough that I had to stay home from work for a week at tops each time. and I went back to work after the second flare up three weeks ago.

This past weekend I had a performance review/welfare check with management, and they commented that I have already been sick twice this year and that I was sick more that the company allows last year as well.

I try to explain to them that this is not going away and that I have to live with this, and that they have no idea what I go through when the pain flares up. I don't think they understand how bad it gets and that endo is never going away, that one surgery doesn't fix it and make it all better. How do you get people to understand? I have already had a disciplinary last year because I was out sick too many times for the company policy, but how can they tell me that they want to help make work easier and less stressful for me and then tell me that I have to try not to be off ill so much!!

Sorry for the long rant/post but I am getting tired of trying to explain to people that there isn't some magic pill that you can take to make it all better, and that just because I don't look physically ill or have something that you can see doesn't mean that I am able to perform my job 100% if I'm ill.

[CCWildSwimmer]

this must be so difficult for you! I am extremely lucky that my employer is very understanding! Unfortunately endometriosis is not seen as a disability and therefore we have very little protection legally. There are a few stories here that may help you, however would it help if you got a sick note from your gp every time you are off? endometriosis-uk.org/catego... . You can also try to get your employer to sign up to this endometriosis friendly employer scheme to help their understanding further endometriosis-uk.org/endome...

[bluebug in reply to CCWildSwimmer]

If you look at other posts on this forum you can see that some posters have their endo recognised as a disability.

The law is written in such a way in the different jurisdictions of the UK to recognise while one person may not be disabled by a condition, another person with the same condition is.

Btw I'm not picking on you it is just a common misconception about what conditions count legally as a disability.

[EternalSunshine87]

Sorry that you're going through this. I'm a teacher and had to start having back to work meetings because of the amount of time I was having off. My employer was understanding, but it was more HR who didn't seem to get it. As soon as I mentioned I'd been speaking to my union things started to happen and things were put in place for me. Since then, I haven't had to worry about being off with the symptoms of endo. I don't know if there is something similar that you could do.

[bluebug]

"You're disabled under the Equality Act 2010 if you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities"This is from the government website.

I know other people who have long term intermittent conditions that fall under this act and they have been told when completing forms about their health to fill them in as they are on their worse day.

On their worst day some of them are bed bound, and while others are admitted to hospital and put on drips. On their "normal" days they move amongst us with it not noticable they have their medical condition.

The law is written in that way as two people can have the same condition and it affects them differently.

So as someone who fell under the Act for another condition who had to have it pointed out that the Act may apply, I would suggest you join a union even if your employer doesn't recognize unions - work out how to get in touch with the full time legal rep - and then tell your employer you think you have a disability. Your work place should have occupational health and should send you to an appointment.

While legally you don't have to tell your workplace (or occupational health) how to make reasonable adjustments for you, talking to people with noticeable disabilities they have told me just tell people how they can help you. Yes you will have to repeat yourself but it can stop them making your condition worse. It also can help prevent them sacking you if they can't think of reasonable adjustments when some of them are simple.

If you aren't found to later be disabled you should not be penalised for saying you do. Also if your condition is later resolved it doesn't mean you didn't fall under the act in the past.

Longer term you are probably going to have to change your career.

[ccfd9]

most people do not understand the pain involved. Plus pain killers don’t work well with Endo pain, dulls you but not the pain.

Have you looked into nutrition? Many people get relief by avoiding wheat and gluten. Of course stress it the trigger for the flare ups. Then you put yourself under stress cause you can’t do your work properly. Mindfulness and meditation may help you calm down and de-stress. There is a book Endometriosis: a key to healing and fertility through nutrition by Dian Shepperson Mills endometriosis.co.uk that may help. Good luck

[Moonglo]

Hello! Sorry to hear you’re having a frustrating time with your employers. I had a similar experience with the contradictions and gaslighting. In the end, I had to demonstrate that although I had this crippling condition, I was also willing to co-operate with my employer as far as I could. As others have recommended:

Print out and hand the endo friendly employer leaflet from Endo UK to your HR dept.

If you can, join a union and ask them for advice about your legal status. You might need to have been a member for at least a month, from memory.

Also:

Do you have Occupational Health? Your employer might recommend you attend some appointments.

Keep a diary of your symptoms, flare ups, moods and how work is affecting it all.

Keep evidence of every doctor/hospital appointment, A&E admission, etc.

My issue was resolved after applying for part-time hours. I magically had no more time off sick! I had time to rest and recuperate and to go to medical appointments in my downtime. You might have to consider imaginative ways to resolve your issue to stay with that company, or sadly, move on.

[Greenlady48]

that is awful and again we hear the same story over and over again

The pain is real and yet nobody but a fellow sufferers understand.

I’m going through the same process, I unfortunately work for the nhs as a nurse. The gp is happy to give me a sick note. But the managers I work for just want staff. I’m currently off sick and on my 5th month. They will cut my pay to half soon. I am awaiting HR to contact me. If I was in a wheelchair they would build a ramp for me. Hidden illnesses are harder to prove.

😔