For the most part I try to stay positive about my pain and my life living with EDS. Don't get me wrong I know things could be a lot worse, however the last few months I have been silently struggling living with EDS and I am finally ready to talk about it.
Over the last few years I have tried to be so strong. Strong for me and strong for my family. I have been so focused on trying to be okay that I ignored myself when I felt myself slip into a dark place. I like to put a happy face on because I do not want people to pity me or worry about me. I always had the mind set of "it could always be worse, lots of people have worse things than you". And it is SO true. But the problem with that thinking is you are so focused on it could always be worse that you don't stop and take the time to realize it's okay. It's okay that you are feeling overwhelmed. It's okay that you are feeling the way that you feel. Just because people have it worse in the world doesn't mean you do not have the right to be mad about the life you were dealt.
It is hard to go throughout your life hiding how you really feel. Having EDS and POTS is absolutely terrifying. When I was first diagnosed I was in denial. I met and saw people who had EDS and I never thought I would be like those people. Over the years I have become like or worse than those people. Doctors look at me and say "I know people with EDS but its not this bad, I dont know how to help you at this point". I became the person I was terrified of when I was diagnosed.
There's been nights where my lungs suddenly feel like they cant expand and breathing becomes almost impossible to the point that I start to see black spots. There's been nights where my heart becomes irregular and I've passed out. There's been nights where I honestly thought something was so wrong that I was dying. And going through that and pretending like everything is okay is so damaging and exhausting emotionally.
"What doesn't kill you makes you stronger". I hate this quote. I hate everything about this quote. I used to think about this when I first got diagnosed. I thought it was true. 5 years later I don't think any part of this is true. Yes getting through each day means that I am a strong person but that is because I have no choice. It doesn't always "make you stronger" and it doesn't "build character". Sometimes (most times) suffering is just suffering.
I do not feel proud or accomplished by the end of the day.
When I first was diagnosed I would say to myself at the end of the night "I am so proud of myself, I made it through another day". No part of me feels that way anymore. I am not proud that I made it another day. I am furious. I am mad that "making it through another day" is even a thing I have to worry about.
I do not feel accomplished making it through the day. I am embarrassed. I am embarrassed that it is hard for me to make it through the day. I am embarrassed that I can do absolutely nothing all day and at the end of the day I am still exhausted.
I do not feel like my EDS positively affected my character. I feel as though the pain and stress has caused me to disappear and become someone I do not recognize.
I am filled with anxiety, pain, frustration, anger, guilt and exhaustion. Its hard to be care free or fun when you feel like you are crumbling and fading away.
I have anxiety constantly. My body is unpredictable and I think to myself constantly throughout the day:
-Is this a normal symptom?
-Is this something that is normal or do I need to go to the ER?
-Could I afford to go to the ER?
-Will the doctors in the ER believe me?
-Will they even know what EDS is?
-Will they be able to help me or will they send me home not knowing how to treat me?
-Is this pain going to stop?
-What happens if it doesn't stop?
-What happens when I cant handle the pain anymore?
-How do I explain to loved ones that living is scary?
I am filled with frustration. I want to be able to do things that I am physically not able to do. I cant live the life I want to live.
I am angry. All of the time. I did not sign up for this. What did I do to deserve this? I am 22, this isn't the life I should be living. I shouldn't be drowning in medical bills constantly. I shouldn't be going to multiple appointments a week. I SHOULDN'T BE FEELING LIKE THIS.
I am filled with guilt and worry. I am guilty that my family has to take care of me after surgeries and deal with the stress of having a sick kid. I am guilty that I have an amazing boyfriend that got stuck with the sick girl. I worry every second of every day that one day it will be too much and I will lose the love of my life over something I have no control over.
I am exhausted. Exhausted from being sick. From being in pain. From working 2 jobs and trying to pay my medical bills. I am exhausted trying to balance a normal life and all of my doctor appointments.
EDS has put me in a dark place, but I have no choice but to get up every morning and fight as hard as I can, because if I have learned anything it is you can keep going even when you are convinced that you cant.
