living life yellow.
the ramblings of a girl with endometriosis
I’m sending you this letter because our friendship over the years has meant so much to me, because I care about you, and because I truly see us being friends for many more years to come. However, over the past year you probably don’t feel that have been that great a friend to you- and that scares the life out of me. Friends really are very important to me. Perhaps you think I’ve become quite distant or disinterested in our friendship? Or maybe you think I’m depressing to be around, or boring because I rarely come out anymore? I really wouldn’t blame you, I suppose I have been like that a lot of the time. But I want you know that I haven’t been acting like this because I don’t care about you, or about our friendship. Nothing could be further from the truth. You see, I’ve been feeling really unwell the last few years, and last year I was diagnosed with endometriosis. In some ways it is so good to have a diagnosis now, because I am hoping to use it to get the treatment I need to feel better. I know that you know this already, and I really appreciated how nice and sympathetic you were to me when I told you.
What I don’t think you know is how much endometriosis affects my daily life, and how difficult I am finding it to come to terms with my diagnosis. I know these things can be hard to hear, but please, let me tell you now. I think it will help both of us to move forward. I have stage IV endometriosis, which means that I have deep and widespread scarring on my uterus, ovaries, bowels, pouch of douglas, bladder and colon. Because of this, I experience severe pain in my abdomen, rectum, and back. This pain often lasts weeks at a time, and I find it really difficult to cope with life and get out and about when I’m having a ‘flare up’. For me, the disease also comes with an array of other symptoms which can be debilitating such as vomiting, diarrhea, headaches, and breathing difficulties. As my body tries to cope with these things and the inflammation they cause, it leaves me feeling constantly exhausted. Some days, I barely manage to get out of bed. This tiredness is unrelenting and nothing helps to get rid of it. This isn’t how I want to live or how I am used to being- I want to be full of beans again and live every day to the full. And to top things off, the severity of my endometriosis means there is a very real possibility that I am infertile. There aren’t words to tell you how much this breaks my heart. I try to push it to the back of my mind, but it is there every day just chipping away at me.
These things are so frightening to me and life just feels unbearably difficult at the moment, particularly as these problems are likely to stick around since endometriosis is a chronic condition with no cure. I’ve been emotional a lot since I received my diagnosis, I think you’d be alarmed if you saw how much: all through the night, in the shower, at work in the bathroom, everywhere. It’s why I work at home most of the time now- so people don’t see. My doctor and family thinks I have depression, and I probably agree. I think I am mourning the loss of the person I used to be. Remember her? Always the first to a social event, always laughing, super fit, and dreaming big for her future. I’m not that person anymore, and having endometriosis means I am going to have to change the way I do things sometimes. I need to live at a slower pace, but I won’t allow it stop me altogether. I’ve been feeling so alone with all of this fear and grief. Like nobody else cares about it. At times these feelings have overwhelmed and incapacitated me- I know how melodramatic that sounds but I need people to understand how just getting through each day is an immense physical, mental, and emotional challenge right now.
But I don’t want to feel this way anymore, which is why I am telling you all of this, because I know you care and wouldn’t want me to keep going on by myself. If you can find the strength to stand by me while I try to get to get the treatment I need to get back on track with my life that would mean so much to me. Perhaps you could come and visit me at home sometimes- especially when I am feeling too low or unwell to leave the house? If not, maybe we could chat on the phone- so I know you are there and thinking about me from time to time? At the very least, please don’t be offended or annoyed when I don’t turn up to social things or cancel at the last minute, it’s hurting me more than you that I can’t be there. When I am feeling well enough, I promise to be there with a smile on my face every time. The little things will make a big difference to me. And the same goes for you- I will promise to do my best to stay in touch, and am always here to talk if you need to. Things haven’t changed in that way.
Thanks so much for reading this letter, and I am so sorry that I didn’t have the courage to say this to you earlier or to your face. If you have any questions I would happily answer them any time. Questions show me that you are thinking about me and want to help. I think everyone has been to scared to ask me any-maybe because they want don’t want to upset me- but I’d love to talk about it with you if you feel able to.
All my love as always,
PS; here's some tips that might help you, help me.
Do some research.
Doing some research about endometriosis shows us that you care. By understanding the shit we go through you can become more compassionate. The fact that you are reading this blog is a great start! Endometriosis is much more than just period cramps.
Don't say "I hope you feel better soon."
Accept that this is going to be an ongoing thing. With chronic illnesses, you very rarely "feel better soon." Just because I had surgery doesn't mean I'm fixed. There is no cure to endometriosis. This is going to be a thing that I'm probably going to be dealing with for a long time.
Understand that I am going to cancel plans sometimes.
Endo flares come out of nowhere. There has been many times where I have been fine once second and then doubled over in pain the next. Last minute flaking on plans or having to bail early isn't because we hate you, it's because we are sick.
Don't assume I'm are going to be sick all the time.
One of the things that has happened to me is that "friends" stopped inviting me out and to events because they assumed that I wasn't able to go because I was unwell. This sucks because it makes me feel even more excluded. At least sending an invite means the thought is there.
Don't spam me with snaps of you having fun without me.
Nothing is worse than lying in bed being spammed with snapchats of all your friends having fun together. This always makes me have major FOMO and makes me angry/upset/frustrated that I'm missing out on the fun once again.
Talk to me.
Pain is lonely. When I'm home alone for days because I can't get out of bed, I start going crazy. Human conversation makes me feel sane again.
Keep the baby talk to a minimum.
Bare in mind that some gals with endo struggle to have babies, which means baby talk can get upsetting. Be mindful of who you are talking to and consider talking about other things.
Don't "get used" to me being sick.
Some of my friends have gotten used to me being sick. It kinda sucks. Whenever I'm in hospital or bedridden, they act like it's a regular, casual thing now. Just because I'm sick all the time, doesn't make it suck any less.
When I say I'm having a good day, know that I'm probably still in pain.
Even on good days, I'm still hurting. A good day for me is being able to manage with pain relief at my side.
Don't talk to me about how bad your period is.
I find it very hard to cope when my friends complain about how bad their period is. I would give anything to have my period to be over and done with within 5 days. Endometriosis is like living with period symptoms everyday, but x1000. It's very hard for me to be sympathetic.
Do talk to me if you have concerns or question about your menstrual health.
I'm an open book and I've been there all before. No question is TMI for me. I will be there and support you through any questions you have. I'm your friend and I want to be there for you.
Hope this has helped you understand.