As I was speaking to someone at work tonight ( I work in a hospital) about my history and struggle with endo, she looked at me with tears in her eyes and said ‘you are so incredibly strong and yet you are so sweet for everything you go through on a daily basis.’ She also asked me how I don’t consistently ask ‘why this happened to me.’
Throughout our discussion, I realized I kept talking about what I wish people knew. Tonight, I thought I would do a blog post about what I am sick of hearing concerning my endo, but I figured I would switch it up and instead ‘what I wish people knew/what I want them to know.’
It seems no matter how much I talk about endo, share articles on facebook, spread awareness, etc people just still either have no idea what it is or are completely uneducated about it. From thinking surgery is a cure, to that pain is only during my period, to that it is no big deal- the list goes on and on.
I have narrowed down a variety of things I just WISH people knew. Things I think of daily that I wish people realized I go through. Things that I wish people could understand and step in my shoes for a day- because then maybe we could find a cure.
1 . Please stop asking me if I feel better: One of the reasons I named this blog, ‘This is My Normal’ is because my ‘normal’ health is not the same as someone without endo. I have always said that I should have a different pain scale than the 0-10 because everyday I am around a 6-7, so it is hard to say that my 7 is the same as someone who doesn’t have chronic pain. To be honest, I have no idea what to say when someone asks me ‘how are you feeling today or are you feeling better?’ Granted- I try to keep in mind I should be thankful they care enough to ask. But if I say I feel better I would be lying, but if I gave you the true answer- you’d call me whiney. Yes, some days my pain is worse than other days, but I have severe pain everyday. So if I feel ‘better’ or ‘good’ it means my pain is still there, but it just isn’t the worse I have ever had it. Also, I have chronic fatigue- I can sleep for 12 hours and still be exhausted. Don’t ask me if I need to take a nap to feel better. Endo also suppresses my immune system- my body is consistently attacking itself which results in an immune system deficiency. This means I catch anything and everything going around to the max- a simple cold can knock me out for 10x longer than a normal cold because of how shitty my immune system is from endo.
2. Being in pain is exhausting: When I say I am tired, it doesn’t usually mean oh I only slept 5 hours last night I am sleepy. It either means 1. I was restless from pain all night, barely slept and now I am in even more pain or 2. I slept for 12 hours and I am in so much pain today that I am exhausted from it. If you have ever had a sore back, pulled muscle, headache, sore throat, etc. you know how tiresome being in pain can make you. Now imagine that times 10 and everyday- most days I want to fall asleep standing up (however then I have insomnia from pain and don’t sleep) Most days my joints and body ache from being so run down and tired. Chronic fatigue means no matter how much I sleep or what I do during the day, my body is always exhausted. Being constantly tired effects everything (some I will discuss later): from my emotions being wacky, me being grumpy, not being able to be social like I want to, my focus being all over the place, etc. I have what I call painsomnia- being exhausted from being in pain, but in so much pain I can’t sleep .
3. My life is affected every day in a new way: I may have had this disease for 8 years now, but everyday I learn a new way that endo has affected my life. Most people know the basics: fertility issues, pain, hormone issues, etc. But it is the small things that hurt the most and the things people don’t think of when they hear endometrisois. These little things are the things that I cry for hours about because I get frustrated endo has affected my life in big ways like my relationships to small things like my hair. For instance, I have always been one to constantly change my hair color and have nice nails, and I have always struggled with my skin. Come to find out- all the meds have destroyed my hair to where it can’t be long and it can’t be bleached, only short and dark. My nails are brittle and break easily because of the beds and my skin SUCKS from all the meds.
4. It’s not just a bad period: If I had a penny for every time someone said to me ‘oh yeah I get cramps too I know how you feel’ or ‘oh maybe I have that too my periods are bad.’ periods are not pleasant for anyone. I am not disregarding your pain but every time you say to me that you think you have endo because your cramps aren’t ‘fun’ is degrading and belittling to me. Not only are you dismissing my pain, but you are spreading false knowledge and education about endo to others. I have pain every. single. day. not once a month for a week- except during that week it is 1000000x worse. oh and if your doctor thinks you have endo- do your research before you start spreading awareness if you are going to try to help spread knowledge, please make sure it is accurate and right.
5. My emotions are a roller coaster: Between all the hormones I am on, the fluctuation of my hormones, my already existing struggles with mental illness, the whole ‘not having a cure thing,’ the list could go on and on as to why some days I am just fucking grumpy. I am tired, in pain, my brain is foggy (endo brain) and I just want my heating pad. I hate life. I am miserable. Yes I am grumpy. Or- everything is making me cry- from happy tears, to frustrated tears, to mad tears I cry a lot. And yes this all can change within minutes.
6. I don’t look sick: I take great pride in the fact that people always say to me ‘well you can’t feel that bad you look good.’ As annoying as it is to hear, it is reassuring to know that I don’t look as shitty as I feel. Trust me, if I wanted to look as bad as I feel I could, but I don’t want to. I want to seem strong and put together– when inside my body is falling apart. I have always been that way whether it is with physical or mental health- I wanted to seem completely put together and stable, even when I was totally a mess and everything but stable. Also, I have chronic fatigue so I probably do look exhausted all.the.time.
7. It’s all I may talk about: It takes me quite a while to feel comfortable enough with someone to talk about my endo. Granted this probably comes from the amount of ‘friends’ I have lost because they told me ‘I complain too much about my endo’ or ‘talk about it too much.’ So yes- now I just don’t talk about it or bring it up. But- when I do feel comfortable with someone- I talk about it ALOT. I hold it in so much that then its like word vomit when it comes out. But I instantly feel closer and have a stronger friendship with those that are willing to listen, be there, and try to understand.
8: Nothing means more than when people say they want to learn about endo: Spreading awareness and knowledge about endo is one of my biggest passions however the moment someone decides to look up endo and do research themselves, my heart gets so warm inside. When someone tells me they just looked it up or want to learn more, I get the same feeling as when someone buys you flowers. I think it is amazing that someone is spending their free time to learn about my condition. The more people learn, the more awareness can be spread. Also, it shows you want to learn more about me, since it is such a big part of my life.
9. Stop asking me if I want kids: Every single day someone asks me if I want kids. Of course I want kids. However, I was told at the age of 13 I was probably not going to have my own kids. And to be honest, between my moms struggles with getting pregnant and having me and the fact I don’t want a girl to give this to, I want to adopt. And yes, I know I have to find someone who agrees with that and yes I struggle with the fact I will probably never have my own kids but for the love of god we don’t need to talk about it everyday. And no- I am not pregnant. And yes, I am super bloated. My uterus is so swollen it is the size of someone who is 12 weeks pregnant.
10. There is no treatment, cure, fix, etc.: please stop telling me to take advil or pain killers, please stop telling me to keep trying lupron, please stop telling me to ‘just have another lap to get it all cleaned up’ JUST STOP TELLING ME HOW TO FIX AND CURE MY ENDO. IT. CANNOT. BE. CURED. there is no treatment!!!! any ‘treatment’ is just a band aid. Hormone therapy can slow down the spreading, laparoscopic surgery can ‘clean up’ some lesions, but not erase them, lupron can slow it all down as well. THERE. IS. NOTHING. I. CAN. TAKE. TO. MAKE. IT. END. and most of these medicines have terrible sides effects that are a million times worse: scar tissues, depression, hot flashes, nausea, etc.
- Lastly- you have no idea ever. ever. ever. what someone is going through. I keep in mind that I don’t look sick- you would have no idea that amount of pain I am going through on a daily basis just by looking at me or briefly talking to me. You would have no idea the amount of hurt and sadness happening inside. So when I lash out or get grumpy, I blame it on this disease. When someone is rude or mean to me, I try to remember that I don’t know what they are going through. I truly know I am not the only one with a chronic illness, but I truly wish more people could respect the fact that I do things on a daily basis that they wouldn’t last one hour doing in the amount of pain I am in. I am not asking for a reward or award but respect- respect the fact that if I wanted to be on disability I could be. Respect the fact that I really do want to make plans and have fun with people, however my body is so, so tired and I am in so so much pain.
I want to be normal. I really do. It’s just getting harder and harder by the day though.
Once again- thank you for taking the time to read this. Also- please please don’t hesitate to reach out with comments, questions, or things you want me to discuss.
My next post will probably be about my journey with mental health or just some more ranting- who knows what the next few days will bring!