A letter to the people around me.... - Endometriosis UK

Endometriosis UK

72,880 members53,252 posts

A letter to the people around me....

Jayme profile image
17 Replies

To those who ask what is wrong with me,

Endometriosis. That is what is wrong, and until you deal with exactly what I do you cannot understand. You may have heard of it but it wouldn’t surprise me if you haven’t. Although it is very common many people have never heard of it. If you haven’t heard of it, feel free to ask what it is, I know you’re curious, but please be prepared for an extremely simplified answer because what it is and what it affects is a long and personal story and unless you want a few hours on the effect it has on my life, the simplified version is a lot better. The simplified version is, my body has cells that grow in the wrong place, this causes my body to constantly attack them causing excruciating pain, low immunity, exhaustion and whole longer list of symptoms. The cells also try and shed away each month causing internal bleeding, inflammation and scarring, and believe me it feels worse than it sounds.

To the doctors and specialists,

Why did it take you so long to figure out what was wrong? I know the easy option is to give me Panadol and send me home, but that’s only the easy option for you. It doesn’t help, I am still in agony and still confused as to what is happening. I know you say the pain is normal, but it can’t be, it can’t and I don’t like being made to feel like I am just being a drama queen with the pain, because you aren’t the one dealing with it. I appreciate when you did finally give me an answer, it gave me hope that it would all be sorted out. Then I found out there is no cure.

To my colleagues and managers,

I am sorry that I can be moody, have a short fuse or have days that I am not working to 100%. It frustrates me just as much and if not more than you. It frustrates me that I have no control over how I am feeling, being in agony and still trying to work a 40 hour week is tiring and on top of this trying to deal with the exhaustion from being up all night every night for the past week unable to sleep because of the pain. It really takes a toll and I promise I am trying my best, but sometimes it is just hard. I appreciate when you support me and try to be sympathetic about how I am feeling, but I don’t want sympathy only understanding. I know when you offer me time off work when I’m not feeling well you are trying your best to help, but the thing is, this doesn’t go away, in fact, it is there more often than it isn’t. I still have bills to pay and mouths to feed and really who wants to employ someone who needs to be in bed recovering at least two weeks out of every month? I know no one wants to employ someone who is always tired and can’t work to their 100% either, but I still need to work, I promise I am trying my best and I thank you for your support.

To my close friends and family,

I am sorry that you get the worst of me. You get the leftover mess at the end of a 40 hour working week in pain and physically and mentally exhausted with life. I apologise that I don’t always want to go out with you, I am sorry that I say no I can’t I’m too tired and too sore, I know it isn’t fair but it is not that I don’t want to be there, I really do. It is just that after a long week at work and a consistent fight against my body that I am losing with no control I am tired and I am sore. I am sorry about the calls with tears running down my face when I don’t know what to do with myself because the pain just gets much. I am sorry I am always sick, either vomiting because of the pain or everything else that I catch because my body is constantly trying to fight cells that it thinks shouldn’t be there, leaving it run down constantly and exhausted. I am sorry you have to see this side of me, but your support makes me realise why I chose you as friends and makes me feel lucky to have you as my family. Last of all, I just want to say thank you, thank you for being there for me and doing the best you can to understand what is going on, it is a hard road but I couldn’t do it without you.

Written by
Jayme profile image
Jayme
To view profiles and participate in discussions please or .
Read more about...
17 Replies
Mcmonkeynuts profile image
Mcmonkeynuts

X x x. Hugs x x

Jayme profile image
Jayme

Thanks for your support Lindle x

Nicky-G profile image
Nicky-G

I love the way you have articulated this x

Jayme profile image
Jayme in reply toNicky-G

Thank you for your support and feedback Nicky-G, it is much appreciated xx

Sadie79 profile image
Sadie79

Feels like I am reading a letter that I have written. XXX

Jayme profile image
Jayme in reply toSadie79

Thank you for your feedback Sadie79, it is good to receive and know that someone else feels the same too. I wish that other people could understand what we go through! I hope that anyone that reads this, that does not have endometriosis could gain a small insight into what it is like xxx

Sarahcoops profile image
Sarahcoops

This is amazing, Ive just let my husband and friends read this, cos although they have seen me go through this for the past 10 years I still think they find it hard to understand. Thank u xxx

Jayme profile image
Jayme in reply toSarahcoops

thank you so much for your positive feedback! It is a hard thing to understand for others, and I believe it is only those who have that truly know what it is like, head up chick, it's hard but we're all strong !! xxxx

ShannonMarie1993 profile image
ShannonMarie1993

This is amazing. I'm so glad that someone was finally able to say how we all feel. No one understands the pain but us. At least I know that I'm not the only one going through all of this.

Jayme profile image
Jayme in reply toShannonMarie1993

Thank you for your reply, I appreciate the feedback, we are certainly not alone although it often feels that way, just gotta stick together :)

Wasowski profile image
Wasowski

That made me shed a tear. So well written and relatable x

Jayme profile image
Jayme in reply toWasowski

Thank you xxxx

gemp54 profile image
gemp54

Such beautiful words. I'm awaiting my diagnostic lap but a lot of this explains exactly how I'm feeling regardless of whether they find Endo. I have just shared it with my husband because as much as he does try to understand its hard for him and like you said I do feel he gets the worst of me and I hate that. I hope this will help him to understand why. Thank you for posting. Xx

Jayme profile image
Jayme in reply togemp54

Keep your head up :) I hope it's not endo, but also hope they can find out what is going on for you, there's lots of people who have this awful disease and were all here to support you xxx

Kpickens profile image
Kpickens

Literally feel your pain---there are treatment options out there

Jentco profile image
Jentco

Great post! I agree - send it off somewhere to be published!!

dk1136 profile image
dk1136

Wow, it's brilliant x

Not what you're looking for?

You may also like...

unsure if i should go through with bowel surgery - would love to hear from people who have experience

Hi everyone, I had excision surgery 2yrs ago back when I was 21 but still get really severe pain...
hannah11 profile image

A letter to my Endometriosis

You have slowly been ruining my body and sucking my confidence for years and now I don't recognise...
ASP789 profile image

Really getting to me

So 3 weeks ago, I starting having very severe pain in my lower stomach/pelvis/hips. A week later I...
Lofty1589 profile image

GP won't refer me because she doesn't want to look silly.

Hey everyone. I was diagnosed back in 2012, I then had a lap to confirm it and they found extensive...
green_apple profile image

Struggling with people around me giving birth and being pregnant

Warning- rant coming! I’m really upset today, like really feeling depressed in the past 48 hours...
Elm98 profile image