Lack of understanding from family and friends

[MayNora1]

I’m struggling with family and friends not understanding what I’m going through or experiencing - and looking for any tips on how to handle that emotionally.

I am 34 and was diagnosed with endometriosis and adenomyosis in 2021. I’ve had symptoms since I was 11. Since 2021, I’ve had three endometriosis excision surgeries at a BSGE centre. After having a baby in March this year, I’m going to undergo a hysterectomy later this month.

The pain and daily impact of endometriosis and adenomyosis has been monumental and I can’t really describe how much it has affected my life. I’ve had to leave my beloved career, it’s affected every relationship, I can’t live independently, I struggle to stand and walk on the worst days, and often the pain is so bad I wish I was dead (not because I’m suicidal but because I just want the pain to stop).

Dealing with that has been hard enough but dealing with family members and friends who don’t understand has been equally bad. No one seems to understand the extent to which it affects my life and quality of life and the attitude seems to be that I should be used to it or it’s not that bad. I’ve stopped trying to explain as I just don’t see the point any more.

Any tips or recommendations for how I can deal with this whilst protecting my mental health would be much appreciated.

[Brambledoggy]

Hello, your post is heartbreaking. But also makes me really angry. Why, oh why are we having to go through all this? There’s just not enough being done. And there are so many of us worldwide. That doesn’t help you of course, but knowing there’s others out there, might just give you some comfort. I was once a really good, effective, bubbly PA to wealthy families and boy, it was tough. I bled through clothes in meetings and was afraid to stand up, I fainted in bus stations and ended up wobbling to the loo, usually the men’s! I’ve actually climbed bedroom walls to try and get away from my pain. My endo put a stop to my happiness. I really feel (probably like you) that it has completely steered the course of my life, and not in a good way. My last partner of 12 years did not understand and ended up being really cruel to me and ultimately having sex with someone that didn’t have endo. Much easier for him to deal with I guess. His loss. Anyway we’re not together anymore but the cruelty of this, together with my career ending, my endo being ever present and others just not understanding, PLUS medical community trying to help but ahem, not really! It’s sometimes just too much. With regards to your mental health, you are ALREADY stronger than you know. We all hear you and you are NOT alone. I know words are not enough, the pain of endo is a B#£@*@&. Sometimes I look at other women in the media, magazines and press, looking normal and happy and I feel really resentful that when I was born, I fell out of the rubbish gynaecology tree and hit every branch. I bet you are still beautiful inside and out. Sending a hug. Nina.

[bluebug]

Unfortunately other people don't understand others pain regardless of the condition that causes it.

It's worse if you are supposed to be a healthy young adult as you aren't supposed to be disabled by any condition. It's also worse if the pain fluctuates.

Don't waste your energy explaining to your family and friends who don't get it. If you aren't able to attend something or go anywhere with them just say you can't go. Don't give explanations as no-one is owed one.

As a adult who now responsible for a child you need to be more assertive and blunt with people.

Just do what you can do and concentrate on yourself and your child.

Btw there are famous people with endo and/or adeno. They just don't speak out about it all the time.

[Gherkaderk]

Thank you for sharing this. You're not alone in feeling isolated and depressed because the pain and it's overwhelming presence in our life can be too much sometimes. As I'm sure you know it can be in waves but being a parent too is probably hard enough so this wave must be rough. I recommend talking with a therapist about dealing with changing relationships with friends and family. Your problem is very physically real and a therapist helped me deal with it on a personal level in order to know what I needed to communicate with my family and friends about how I needed them to show up. I have had isolation periods from a couple of members who didn't understand and also couldn't accept that in my case I can't have kids by birth. That's been hard but we can only meet people halfway. I recommend getting the book private parts which is like a handbook to endometriosis in the UK from lived experience and can be quite comforting. I also haven't been able to have a stable relationship due to endometriosis for a while and it's stopped me being able to exercise a lot which has been the hardest as it's how I process emotions. Bit by bit it's getting better and I'm working on making milestones for myself separate to endometriosis like being able to do yoga again by October. These are soft milestones, they don't need to happen but it does give me focus and control in a way that feels comforting. I also changed job to be a joiner as being physical each day seems to help. You're going to need to be selfish and figure out what you want in your life and do tiny steps towards them and when you can't do it alone write here or to endometriosis UK or to support groups for parents. I know a lot of women without endo who have had kids have had pelvic complications that may relate. Either way keep talking about what you're going through as you are doing and be kind to yourself. You are so strong and already a role model for your kid. You'll be alright and you won't be alone we've got your back. Big love, Hannah (ps I'm 34 and @sunturned on insta if you want a pal)