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Endometriosis UK
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Coping with people who do not understand

Hi Ladies,

Currently recovering from a laproscopy - endo was ablated, adhesions removed, ovaries were fused to pelvic wall and detatched, also had mirena coil fitted.

For the years I've been dealing with endo, I have lost many friends who do not understand when I say "sorry I'm not well.... again" family members would just say "oh are you hungover did you have a good night?" and no matter how I explain, they just don't get it! And not to mention the amount of times I hear "but you don't look sick"

since I've had my op 2 weeks back, a cousin of mine came up and actually asked what they had done, so whilst explaining it, I was interrupted and told "oh I had that once, they were removed and i'm fine! you'll be fine and back to normal soon" - that was it conversation over. as well as having another family member saying they knew someone who had it once and they were fine

SO the point of my rant here, is anyone else fed up of having these little digs and questions where they just don't get it!?

how (if at all) does anyone cope with no one understanding and with people saying things like this to you?

any help / suggestions are welcome - really getting to me lately am fed up with it.

even my closest friend hasn't been to see me since my op - am I selfish to think she should have been to see me?

16 Replies

Sorry to hear you are suffering! How you feeling now? It's difficult to explain something that many people don't understand. I had a similar rant a few days ago!! This is a brilliant place to find like minded women who have the same struggles. People forget even though you can't see it, it's not just physical it's emotional!

With regards to your friend it's not selfish. But at the same time they may not know what to say if they haven't been supportive!

Take care hun



Thanks hun

well I was going to go to A&E tonight but know I will be turfed home so trying not to go, pain seems so much worse today, but could be trying to do too much too soon!

I know, you're right. It must be hard to understand something you've not gone through yourself it just makes me feel very lonely and especially when I get looked at like i'm making it all up or exaggerating.

thank you so much



It's difficult only you know your own body! Have you got pain relief and tried hot water bottle or a tens machine or anything for the pain? Don't push yourself too much you're still healing.

I completely feel the same! You explain how How you feel then if people see you they go oh I thought you'd look worse. Thanks!

Try stay positive. Without the bad days we don't appreciate the good!


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I've felt the same last night and now Hun-I don't know what to do I'm in so much pain-gynae won't do much else though😒X


Yes, I often feel sorry for myself. In a limbo where I feel guilty as I don't have something 'serious' like ME, cancer, or other chronic illnesses, but still quite indignant that my daily life is often turned upside down. I find cramping whilst out and about is exhausting trying not to look/seem as if I'm in pain. Whereas if I were home I'd be rolling about on my bed, rocking back & forth or pacing the bathroom puffing a lot.

When I say 'guilty' I think I really mean that society doesn't really consider endo as a real or serious condition. Clearly I don't want a chronic illness. I just don't feel like I'm allowed to feel sorry for myself, that I should learn not to expect sympathy... Goodness. I'm

Feeling glum now.

Hope you feel better soon. Ask yourself, if your bestie had her tonsils out and got an infection that got her signed off work for 2 weeks would you visit her? Thought so.


I completely get where you are coming from! my dad has had cancer a number of times and so a lot of the time I feel i'd hate to compare in any such way as I could not imagine what he went through. which is why I could never say what i'm about to say in front of dad....

I would never ever wish for anyone or myself to have anything like cancer etc but sometimes I feel with something like Cancer people understand to a degree or at least know the severity of it - do you know what I mean!?

Don't feel glum, i'm sorry if I've kicked some emotions up! You are entitled to feel sorry for yourself from time to time, end of the day who goes through it - no one but you! and how can we not feel glum with all these thoughts and feelings running round!?

and that's just it - you don't want pitty or sympathy but just support and a level of understanding- we then beat ourselves up for not getting it and we shouldn't. starting to not expect too much from people especially when what you would do for them v what they do for you!

chin up and at least we all have each other xx


I totally understand.I feel exactly the same and have been in tears since Wednesday.I couldn't attend a 'friends'birthday party in December,I made the effort and got my dad to pick me up to drop birthday and Christmas presents to her house-nothing back,I've never heard off her since.I feel I've lost my identity and I'm so low at the moment xxx


That's exactly how I feel - since I fell ill again in September I feel like I've lost my identity as well. People I really like and got on well with seem to not want to be anywhere near me any more and I'm wondering where my life has gone!

Goodness, I wish there was something I could do for us all xx


Oh I've had exact the same thing! I had a friend once, I say once as we drifted apart for obvious reasons - lack of support....

She would cancel plans if she had a cold. I would get a text to say she had the sniffles. whilst I don't like to make anyone feel like I am going through worse than them there were times and even now where I go places even when I'm in pain and cover it all up, so I don't cancel on other people all the time - to then hear a cold and I think really? i'd love just a cold lol

yet when I cancelled on her one day she went crazy and ranted how an awful friend I am.

I'm starting to realise its those friends we don't need in our lives. we need to surround ourselves with positive people and those that give us even a little support. so we can work on us and get our identity back, this illness definitely changes us

chin up - always here to talk x


Go onto endometriosis.org it has leaflets and information in simple terms on endo,show them that so that they can understand it.Ive given my employer an employer copy so that they can understand what is going on.xx I know you shouldn't have to prove yourself but show them hard evidence that it is a condition that exists.xx


Thank you :) I have done that too may give it another go though xx

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Tell me about it!! So frustrating when having to cancel all the time on people or not be able to go out at weekends with your partner etc etc. Really does get you down. Esp when you also have to deal with people who just don't get what you trying to cope with. Like you say when we do manage to get out, we put on a brave face, I think to protect others in some way from worrying about us and us wanting to be "normal" but we are not. (If that makes sense?!)

I constantly get from my mother in law "take a pro-biotic yogurt that will cure you" or "the sun is shining is that will make it all go away!" My husband to that one did say back "If it was that easy an answer do you think we would still be living here in the UK!" But it went through one ear and out the other cos not many days later, the same thing said.

On another note, Endometriosis is a chronic illness/condition. With what it does to out bodies and how effects us not only physically but mentally too and not only home life but work and social too to is an evil thing. I think we are made to feel that it not a chronic illness because we are made to feel that it is just "period pains" and we should be able to cope and just deal with it. Without the recognition in the health world, lack of understanding and knowledge from Dr's, what hope do we have for people to understand us and understand that it is a big deal. It is chronic. I also think what doesn't help is because it affects women in so many different ways we do get the words to us "well so and so has it but she is fine" or "so and so had it and she had a laproscopy and now she is fine and has been for years" or "so and so had a hyserectomy and she is now cured". It makes us look like and feel like we are not doing as well as others. But we are. We can only do as well as we can manage and what our body enables us to do. Doesn't make it any easier tho!!

Sorry to hear your closest friend has not been to see you or heard anything from her. I would like to think she is just trying to give you some space to deal with it and is scared herself with what it is doing to you and doesn't want to see you in pain and recovering. But I have friends who have illnesses and I am always texting them to see how they doing or trying to visit if my body is having a "good" day. So not even a text to you is very questionable. I am also fortunate to have friends who are understanding. But still doesn't make me feel any less guilty or upset when I am having to cancel doing things with them, or always saying I feeling rubbish and have a hot water bottle with me when do see them.

I hope you start to feel a bit more human soon in your recovery from the LAP. Hope you do hear from your friend soon..if not all you can do is leave the door open for her (if that what you want) and try to cherish those who are still there for you.

Sorry I have waffled on!! x x


sorry to hear about that, i can relate to you as well at the moment i just need a break but my family are telling me to go and work but i dont feel ready and think i will be taking a lot of days off, so they yell at me as well and say theres nothing wrong with you, i feel your pain and stay strong :)

I just do what i think is right and fight for my rights and to be honest if your friend said that to me i would probably not talk to her again as she doesnt understand me. (but thats me) you are totally right she should of came to see you even a msg or call would of been ok.

and im sure your family will understand you just stay happy for yourself :)


No you're not selfish, she should have visited you! Totally agree that people don't get endo and how badly it affects your life. I wrote about this in my blog in fact it was one of the reasons I started it. It's lack of knowledge of the condition I think which is why lots of people are trying to raise awareness. It wasn't until people started reading my blog that they actually realised how much I had actually gone through-perhaps you'll also find it useful/cathartic? Xx


Hi It can sometimes feel like you've been abandoned, I worked in a hospital, you know that place where the staff are supposed to be caring and focused on making people feel better.

I had a hysterectomy and only two of my colleagues bothered to come and see me,even though I was in for 4 days, in a ward 100 yards away from the 1 I worked on! Just trying to say that I know what it's like to feel that people don't understand or get how you feel.

Most of us ladies on here will have been through some aspect of what you are going through. We are all here for each other.


I've just had my boss phone me, as I called to say today was a bad day (as in foetal position pelvic pain, leg pain etc etc) and she just called saying oh so and so saw you in the car park and said you didn't look unwell! Because even though I fee crap I still have to take kids to school! And seeing me through the car window and me smiling in acknowledgement of seeing you is clearly me skiving off work and not really being in pain at all! Just makes me so mad that I have to justify myself all the time when I try so hard not to let it affect me every day!


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