How to get your family to understand!

I was diagnosed with Endo just before Christmas after having a lap done confirming what I had already been thinking. Anyway after I was diganosed I read up on the condition and what it would mean (was just mainly thankful I knew there was a reason for the pain). After finding out I was really depressed, was almost like I was so driven on finding the cause for the pain and being right that I didn't consider what it was going to mean for the rest of my life.

My partner is amazing - he is so supportive and understanding and tries his best to read up on what might help me and reduce my stress to help with the pain etc - however his family and mine have had no real interest in finding out what it actually means for me - my family say well it is what it is you just have to get on and deal with it so no point moaning and his mum is more concerned about if she can have grandchildren and when it will all be better and over with. When we go round there I try not to say anything as I get the look and the pitty look of " are you having tummy pains again"!!! Now I'm at e point where I just avoid trying to see my family and his and I don't want it to be that way.

Does anyone have any suggestions on how to get them to understand???

Thanks xxx

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  • This flyer gives a very good idea about endo - and I think it might be worth printing off and handing to your MIL and any other relatives that are not 'getting it'.

    media-cache-ec0.pinimg.com/...

    It's the best one I have seen, but there are others - just google search in google images endo awareness .

  • I'm definitely printing that out to hand to a few people ! It sums it up perfectly with no long winded explanation. I've told a few friends to look up endo but I think they get bored reading and so never fully understand! Sorry for jumping in on your post Jenna . X

  • Maybe give them this: womenshealth.gov/publicatio...

    I had the same, my family do not at all realise the significance of endometriosis.

    I try to just give them facts, even though it is very blunt: I tell them that have a lifelong condition which will never get better. It will continue to cause me pain and fertility issues. It cannot be treated and it will not go away. It is a big shock to me both physically and emotionally. It is, by another name, a cancer that I have to live with, although it is not life threatening it does have a major impact. This 'C' word tends to make them listen a bit more.

    If they tell me to just deal with it / get on with it, I say "I am sorry but I don't understand why you are saying that to me. I have a nasty disease which is seriously affecting my life. If I had cancer I think people would try a little harder to understand that it is very hard for me to take".

    Be strong and matter of fact, and don't let them ignore it.

  • Thanks for your replies and for the leaflets to download. It's a great feeling not being alone and I'm very grateful I've found this site and people going through the same thing. Extremely frustrating and heartbreaking that I don't have support from my family and give me the talk of how I'll get through it and get better.

    I don't expect them to understand it but I expect them to make an effort and want to support me. Hopefully the leaflet you have suggested will help.

    Thanks for your help

    Xxx

  • Oh my goodness that is the same exactly for me the mother in law is so he'll bent on making me feel bad and mentioning the grand child thing all the time it does my head in my mother is hell bent on telling me to just get on with it and apparently work call me sickly child behind my back know exactly how you feel!! I have good days and bad days I do tend to not even talk about it except on here as I don't see the point in trying to make people understand rant over!! This place is good for support and knowledge keep your chin up x

  • Omg my mother in law is driving me crazy too! She keeps asking when I'm going back to work and why am not helping around the house. She does not get one bit what I'm dealing. She more concerned about how my hubby is! I am waiting for a lap date to remove some endo, test my tube ( I only have one) and look inside my womb. I've been told not to work until after my lap, i work for an airline and do long haul flying she driving me round the bend! Xxx

  • Hi Jenna, I have been in the same situation as you. Although my family have been very understanding it was my partners family where I had my issues with. I work at partner's family business so I had to deal with them on a professional level too. My partners family are totally insensitive about it all and one day I was off work with pains and when I came back in the next day I got quizzed about why I was off and they made me feel so awful about it they reduced me to tears. So I got some information printed out about endo and left it for them to read, since then they have been better at understanding, I would definitely recommend giving them some information about it. I think people struggle to understand it because it something that isn't visible, which is so frustrating! I hope they start to understand what you are going through properly. x

  • Thank you all so much for your replies, telling your experiences and hopefully offloading a bit. It's difficult because my partner doesn't see how his mum is being and it's not something we can talk about. I now just get on with it and say nothing.

    Glad I've found somewhere I can talk though. Thank you xxx

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