Then you’ve seen me, I come and stand at every door
Then you’ve seen me, I always leave with less than I had before
Then you’ve seen me, bet I can make you smile when the blood, it hits the floor
Tell me, friend, can you ask for anything more?
Tell me can you ask for anything more? – (The Wrestler, Bruce Springsteen)
(Photo): Me with my Dad, sporting some fab yellow (endo awareness coloured, obvs) pants. I love looking back at me then because she’s not “endo me” yet, she doesn’t know the things I know and she’s just happy with her yellow pants and her front yard, and the cat that never liked me. There’s a lot of times I wish I could be her again. Talking about myself in the third person is odd so I’m gonna stop now.
Welcome to the second in my three part series for endometriosis awareness month. The title of this post comes from Aaron Sorkin, creator of The West Wing and The Newsroom, both of which have had an episode with this title. It’s also a question many of us with endo constantly ask ourselves, and sometimes wish people would ask us. So I’m asking. This week I’m bringing you the perspectives of many different women living with endometriosis. These awesome, brave, inspiring women generously submitted comments regarding what they wish people knew about their endometriosis. People really believe some horrifying things about endometriosis and period pain. There’s a lot of things people don’t understand about what we go through every day, and part of awareness month is educating people. So this is our chance! Read this post with an open mind and I promise you’ll learn something valuable, if only so that you understand the basic concept that not all period pain is made equal. Pain that interferes with your life is not normal, a woman’s lot, or a first world problem, it’s our lives and just having people acknowledge that can make a tremendous difference.
Something that’s struck me since being diagnosed is the difference in the way people in the hospital treat me versus laypeople. When I go for a scan or to see my gynaecologist people are amazing. My specialist tells me that he takes my pain seriously and does everything he can to help me find some relief. Nurses who take my medical history before a scan will say things like: “I’m so sorry you have to go through this at such a young age”, or “well, that just sucks doesn’t it? Is there anything I can do?”. The acknowledgement that my life can be incredibly trying at times, despite all the great things in it, is comforting and makes me feel like it’s okay to not always be fine. It’s so different than when I explain it to people outside of that setting. While some people are awesome and honestly want to know about endo and don’t make assumptions, some people say really thoughtless things. Like the guy I apologised to for zoning out because I was in pain and upon explained when he asked was told: “Oh gosh, yes, I know what you mean..I had a really big lunch.” Um, no mate. It’s simple things that can make a difference to my day…someone just letting me feel whatever it is I’m feeling and saying, “I’m right here if you need anything”; having a pain free or mostly pain free day; being able to power through pain and get things done anyway, so that you feel unbreakable. I am additionally incredibly privileged to have access to a doctor who is the freaking best at what he does and I never had to endure doctors telling me that my pain was fictitious or psychological (other people took care of that one for me). Make no mistake, many other women are not this lucky. Equality of access to health care is not yet a reality in this country, and while I cannot speak for my American endo sisters they tell me what a mess their health system is all the time. Unfortunately not everyone gets the best they can find, or can afford what they so desperately need, and some people cannot even get basic access to medical services because of rurality. This is part of the reason I wanted to bring you the perspectives of other women, because many have fought harder and longer than I have to end up in the same place and it’s important their stories are heard. One of the reasons I’m a student nurse is because I want to be actively part of the provision of better care and services for women with endometriosis, to right some wrongs. Building on that desire, I also want to make sure no one ever has to feel as though their illness doesn’t matter, no matter what it is or who they are. There are many invisible illnesses out there, and even more invisible people, and I want someone to see them. I see you.
Thank you to all the lovely women (and one lovely husband!) who took the time to contribute to this post. I’ll go first.
I wish people knew…that not all endometriosis is the same, so not everyone’s pain is the same. I may have mild endometriosis but I often have a lot of pain. Someone with extensive and severe endometriosis may have crippling pain, or they could have none. The symptoms are as diverse as the women whom this disease affects. Everyone has their own stories.
I also wish people knew that just because I didn’t talk to anyone about my pain for years, that doesn’t mean it wasn’t there. You saw what I wanted you to see, and I didn’t want anyone to see what I perceived to be my greatest weakness. I’m not re-writing my history with this pain, I’m simply seeing it through a different lens, one that makes me realise that I was not okay even though I said I was. Pain can be easily forgotten, and just as easily it returns to prove to you how foolish you were to think it was “nothing”.
What Other Women Wish People Knew…
(All quotes appear as submitted, with modification made only for spelling errors/clarity of expression/typos)
That I am not lazy or hypochondriac. I do have a legitimate reason to be sick all the time….
I wish they knew how bad the pain is, just because we don’t have visible symptoms and we are able to hide our pain to get through the day that doesn’t mean you can write it off as minor or pms or we just made it up. It’s real and it hurts.
I wish people understood that it really can be hellish. And that I have done everything I possibly can to be as normal as possible, but my normal is not the same as it used to be.
I wish people would know it’s more than just painful periods. Once endometriosis was found, even my doctors treated me differently-as if this isn’t painful, life-altering….instead they just think you are a drug seeking faker who can’t handle her period.
I wish people knew it can flare up ANY TIME. Not just during a specific time of the month.so please don’t give me the look when i say I am in pain.
Just how truly horrific the pain is. I literally feel like my organs are wrapped in red-hot barbed wire. Yet, I endure by loading up on 20 ibuprofen in a 24 hour period just to be able to fake my way through the day.
I wish people knew that when I hear someone close to me is pregnant I am both overjoyed and heartbroken, and that I feel so guilty for being heartbroken because I’m so scared my husband and I will never have children.
I wish people knew that I don’t go to the ER [emergency] even when I’m in excruciating pain and am really scared because I know that half the time they’ll think I’m just a drug seeker. It hurts me that people don’t even believe my pain. It’s so horrible that I want to scream at people: how can it be in head?? It’s even more horrible when those people are doctors and are supposed to take care of you.
That for me it’s not just pain. I get dizzy, I throw up, and have migraines. I never know when it’s going to strike and most of the time I have to pull myself together and carry on anyway. Normal for me will never be normal for other people.
That sometimes I just want to stay in bed all day and give up trying to be normal. Sometimes I’ve wished myself dead. Then the next week I’ll be fine and ready to fight again, but that dark place is always there and I hate that endo made it. I want to cry and scream sometimes with frustration that I am freaking cursed with this. Why me? What did I do?
From the husband of a sufferer: Just how much this disease not only affects my wife, but how much it effects me, her family, friends, social life, work. Every vacation we’ve ever taken, she’s gotten sick. We’ve been to the hospital too many times to count. Surgery…staying with her in the hospital. Watching her suffer and not being able to take that pain away.
Wish that people knew that there is such a wide range of “normal”. Some ladies are able to deal with this disease much easier than others. Some ladies are completely disabled by this disease. And all of that is considered “normal”.
That it is a chronic disease that can be debilitating at any time. The amount of times I’ve said “I have a disease called endometriosis” and people reply with “oh don’t say that, that makes it sound really awful. What is it?” Aaaaaaaaarrrrrghhhhhh!!!
That I’m not skiving with period pain.
That asking “are you better now because you’ve been ill the last few times I’ve seen you” doesn’t actually help, and just makes me think I have to say I’m fine, because it’s too draining for YOU that I feel crap a lot!!
That it affects every part of your life, not just your periods. My sleep, what I eat, when I can book a holiday or even a night out, how I schedule my work load so I don’t leave important things to a “bad” week, my sex life, my relationships, my social life, my mental health, financially (all the prescriptions, over the counter medicines, heat pads etc that we have to buy to try anything that might help).
That while I may look ok on the inside I’m in excruciating pain. Its crippling and people cannot understand if they don’t have it.
I wish people knew how deeply we often experience feelings of isolation because of this disease. I don’t know anyone outside of this online community [where we posted these comments] that suffers with this disease and that is a very, very lonely feeling.
In keeping with our Sorkin theme, I wanted to include a vid link at the end here from the final episode of The Newsroom, titled “What Kind of Day Has It Been”, which includes Will singing “That’s How I Got to Memphis”. What always struck me about this was how Charlie explained it to Will, saying that Memphis is a stand in for wherever you are. When you say “that’s how I got to Memphis”, you’re really saying “that’s how I got here”. That resonates with me because then I have a hell of a getting to Memphis story, and so do all the women who included their perspectives in this post. Some times the best thing any of us can do is look back and figure out how we got to where we are, because a lot of time it makes you realise how much you’ve achieved and how hard you’ve fought.
High school, painkillers, a brush with crazy, surgery and two university degrees – that’s how I got to Memphis.
The Newsroom – That’s How I Got to Memphis [HD] https://www.youtube.com/watch?v=kp04NqmwWn4