Guilty happy: and I’m not talking about the guilty happy you feel when you eat 10 pizzas, 5 tubs of ice cream and 12 donuts on your cheat day or as I like to call it, breakfast. I’m talking about the guilty feeling you have each day from having endo.
Most the time when people plan a night out, they just have plan how they will get home, how much they will drink and what cash to take with them. When you have endo, you first have to figure out if it’s worth it and if you can make it through the event. We also have to worry about what medication we will bring, how long it might take us to recover, do we have any major plans for the next few days after.
A lot of people don’t understand that we struggle with the fear of letting people down if we say no to attending an event. What they don’t understand is that we are constantly in our own heads going round and round, wondering how we can reach an outcome that makes our friends/family happy as well as one that is good for us. It is a constant battle of whether we let you down or let ourselves down and that shit is hard.
Another problem we face with these situations is, if we go out, straight away people will say “Oh you are better” to which you want to reply no, no I’m not. Thus begins a cycle of misunderstanding between friends, family and you. A lot of people struggle to comprehend sickness, especially a chronic illness they cannot see and that has no cure.
If you aren’t getting better, they think you aren’t trying hard enough. You make small improvements and they think you were faking it all along. Share your story and you are seeking attention. Keep the struggle to yourself and they think you aren’t really sick.
You don’t realize the power of your words, the second you start to doubt us, we start to question ourselves.
Yes, we have some good days and we should never be made to feel guilty for these good days. Some days you wake up feeling really good, your first thoughts are what did I do different yesterday that has made me feel better today. Normally nothing was done different; it is just a day your uterus decides to stop being a bitch. On these days you can normally do a lot more than normal, you smile and you feel really good about yourself.
On these days you have this new sense of hope and wonder is this it now? Am I going to feel this good all the time? You get this exited feeling; you are motivated to join a gym and sign up for awesome things because this is the new you. But sadly, this is not the reality and pain will return whenever and wherever it feels to.
We shouldn’t have to feel bad for these good days, we shouldn’t be doubted or questioned just because one day we look happy and the next we are sick again. Some days things can change within a few hours and that doesn’t mean we are faking anything or exaggerating how bad our illness is. Most of the time we look completely normal, this is why it is called an invisible illness.
Don’t question the severity of our illness, we don’t spend hours upon hours each day at doctors’ appointments, getting blood tests, ultrasounds and seeing our specialists to just waste money or because we enjoy it. These appointments normally turn into hours of justifying to the doctors and specialists that we aren’t faking it, it’s not in our head, that the pain is real and we aren’t just drug seeking. Only after all this to sometimes be doubted by a medical professional that you trust and believe because they are meant to help you get better. We do all this because the only thing we want is to feel better, so please don’t make us justify or prove anything to you.
One thing you start to realize on this journey is that you would give up all the money you have to just have your health because going through this each day is exhausting both physically and mentally. We shouldn’t have to spend our days tiptoeing around people to make sure they don’t think we are faking it.
To all family and friends sometimes we are going to let you down, we may not make all the parties, dinners or gatherings but we try and trust me when I say we feel guilty not being there. What you don’t realize is it actually took a lot of courage for us to say no to you because we love you, but sometimes we need to put ourselves first and rest. Yes, even if we have been resting all that week before we still need more, that’s how this illness works but when we can we will be there.
Sending love to all my Endo sisters xx
About the Author
My name is Krystle (@shehaswhatofficial).
If you had told me one day I would wake up in chronic pain that turned out to be an incurable illness that would impact almost every part of my life, I would have thought you were crazy.
This is frustratingly my reality. I have endometriosis, I am 1 in 10. I also have adenomyosis who is endo’s bff. They are kind of like Cinderella’s evil stepsisters and their job is to make my life that much harder. What does this all mean for me?
It means lots of surgical procedures, it means that heavy pain relief becomes a part of your basic diet, it means that sex isn’t sex anymore, it means bleeding through every nice pair of underwear you own, it means managing your mental health daily to try and get through the pain.
Having an Endometriosis diagnosis means I have fought to be heard, it took 31 specialists, the amount of an average house deposit and endless breakdowns to finally be heard and have my first diagnostic surgery. Endo has affected a lot of my life and taken so much but it has also taught me that we have to keep being our biggest advocate to be heard.
On average it takes 7-10 years to get a diagnosis of endometriosis and these are years that I cannot get back, I was seeking help for my “period pain” from the age of 11 and got a diagnosis at the age of 23.
We should never be silenced about our symptoms because we have to be the voice to make the changes for future women.