People say the weirdest things..... - Endometriosis UK

Endometriosis UK

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People say the weirdest things.....

Hells83bells profile image
13 Replies

People say the weirdest things. Since I've been ill and there has been a question mark over my fertility, I've noticed people say the oddest things!

I'm pretty sure it's because they don't know what else to say and I'm kind of getting used to it now. For example,my oldest friend who I have known since I was 11 was waxing lyrical about her childrn and how they wouldn't have anymore. Then said, well least if you can't have children you can get more sleep and have nice clothes! Oh yes, that's def a consultation, hadn't thought of that! not! Another said to me a week after my lap "oh it's taking a long time to recover"- not really seeing as I've had my insides burnt and my ovary was stuck to my bowel?!

I was just was wondering if others had experienced the same and how they have dealt with it. I've just been shrugging it off to save the embarrassment for both of us but the other half of me feels I said say how it makes me feel.

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Hells83bells
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13 Replies
Julsieeee profile image
Julsieeee

I love this post!!!! Yes!!!! I love the one about recovering time!! People say that all the time " you're stillllll in pain after surgery?" Ummm....thanks I feel so much better now you have pointed it out to me! As if I wasn't stressed enough that I'm not getting better!! Hahaa!! Good to know it's not just my friends!!

eemaalou profile image
eemaalou

Unfortunately it's hard for anyone to know what to say, I have had a couple of comments from friends about it and also from ppl I know with endo who still don't know what to say! If you have a local endouk support group that might help you in finding some people who can relate and that can maybe understand a little better. We live in a society that emphasises people's ability to have kids, everyone assumes that's what life is about so it's no wonder people are left with only awkward, unhelpful comments :/

FMcB79 profile image
FMcB79

Oh I so agree - Endo is such a difficult illness to talk about - from the fertility questions, to the looking like you are about to pass out but still working, to the recovery times.... It's hard enough with friends and family, but what do you say to co-workers, or if you work in customer service like I did for so long? shock people by being honest? "Oh I have a 6cm bleeding lesion on my bowel, and web-like adhesions sticking and pulling my ovaries into places they really shouldn't be - kinda makes me feel like the walking dead"... Shrug it off by muttering something about being tired and hormonal? Lie and say "just a bit tired today, I'll be fine after a good nights' sleep"? Then when you see them the next time and you STILL look like death, all the funny looks and uncomfortable questions start again.

sireland profile image
sireland

Thank you for posting this!

One of my oldest and closest friends was giving me advice/her opinion this weekend - having no clue or real idea about the illness! I didn't ask for it and it was bad advice too, making me feel awkward and really quite embarrassed. I'm sure she meant no harm and probably came from the right place, but even people with the illness don't really know what you're going through and your experience.

This doesn't really help you, but you are not alone in being told weird/annoying/odd things!

When you find out how to react to it, please let me know.

Elwood profile image
Elwood

I recently had to deal with close family members having a discussion on how IVF is wrong as if you are not meant to reproduce there is a reason for it and you shouldn't mess with nature and that people who have IVF are weakening the species!! Thanks very much, love you too!!

I have actually got to the point where I almost enjoy the awkward silence and uncomfortable air I can create when complete strangers think they are best placed to tell me how to deal with this illness they have never heard of! Brings out my dark side! Ha!

I used to cover it up and make excuses but it is absolutely nothing to be ashamed of, its not my fault so I refuse to let other people make me feel like it is! I also found myself playing it down and convincing myself that it can't be as bad as it really is, I am learning to give myself a break on that one!

But you are right, people do say the strangest things when they don't know what to say, if I can see they are just a touch awkward and not standing on a self righteous soap box I am far kinder!! But now I am always honest and open about it, the more people that understand the better in my eyes.

Good luck, you will find the right way for you xx

Hi

Your fertility is nobody else´s business. I sadly never had any children due to missed endo, and ovaries glued to the rectum etc. If you know how people are going to react - I do not talk about pain etc - there are

however other friends who understand, they are dealing with PCO and inferility themselves.

I too reply with "I am fine thanks"... and save my talk to those who are willing to understand and listen.

To the man in the shop - who replies are you feeling abit stressed today (in a tone with no pity)- I reply:

I had my boobs removed, ovarian tumour and my colons glued together -...... he turns quiet...

Good luck everyone!

Hells83bells profile image
Hells83bells

Thank u all for replying, im glad it's not just my crazy friend!

I don't even mind a funny response when we are discussing it because it is hard to know what to say. But when you're not even asking for an opinion that's what when I find it hard.

I had the same conversation the other day when friends were talking about IVF! They said it's unnatural. The girl who was saying it Mum had been very ill in hospital so I asked " didn't your mum have a blood transfusion?" I didn't say anything else and let her do the maths that we lucky that science does intervene to create and prolong life.

I have to laugh about otherwise I get cross. I think what it made me more annoyed was that I didn't respond and I was stewing on it. She's the type of person that's very self righteous too and had the shoe been on the other foot, she would have gone mad!

Oh yes! Recently had to have an endometrial biopsy to rule out cancer but also to see whether I had adenomyosis (which is what my consultant expected). Either way the consultant thought I would need a hysterectomy. My husband and I went round to tell his mum/my mother-in-law of 22 years who first of all said re: hysterectomy "may as well remove your uterus as your not using it, I've had it done" - thanks for the reminder and yes she did have a hysterectomy after having 6 children and being in her late 40's! This is not the case for me!! We then went on to say we were concerned it may be cancer whereby she promptly said "well lots of people survive that now. Anyway I'm worried about my boiler that doesn't seem to be working properly". Needless to say I was very hurt and upset by this and haven't seen her since. I obviously wouldn't stop my husband from seeing her but I was upset he didn't tell her off at the time for saying what she did. She's actually profoundly deaf and I felt like saying "well your ears don't work so we may as well remove those"!

jvg69 profile image
jvg69 in reply to confusedandworried

She sounds just like "someone" I know! What a battle axe to say the least! What is it with these people that they are so lacking in any compassion for other people! I had a miscarriage and had to go to hospital for D & C and was told by a lovely person "oh right well I had one but I just got on with it at home!"

Talk about martyrdom! Woe is me under the cloak of I'm so brave!

Anyway ignore the comments, and worry not about the old boiler ;)

xx

confusedandworried profile image
confusedandworried in reply to jvg69

I know - the mind boggles! Weren't they ever taught that if they haven't got anything nice to say they shouldn't say anything at all?!? Grr!! xx

smithster profile image
smithster in reply to confusedandworried

My sister in law had twins last year, and when discussing my situation my mother in law came out with 'oh well she's good at having babies - she can just have one for you' !!!!!!!

I know it's because she doesn't know what to say but I could have hit her!

Oh completely, just keep smiling, people are daft and don't think. If you pointed it out they'd squirm horribly! :) And anyone that thinks IVF is unnatural just tell them if they get ill, don't use those drugs, they're unnatural! ;) Every time we go on a big adventure around the world everyone's jealous; ever wonder why we can people? More money and no kids, can't wait to swap though now :)

jcrawford profile image
jcrawford

Trust me, any kind of operation takes a long time to recover from. If someone can't be patient or respectful during that time, they probably don't understand. Don't rush or push yourself. If you are worried about the recovery time though, be sure to have your doctor check for infections. If they say no, tell them to check anyway. Plus, the concept of surgery is to make someone sick or injured better, so you probably aren't at your 100% possible best when the anesthetics kick in, so there's no shame in feeling crummy for a while. Just keep an eye on recovery and respect your limits during that time :).

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