When your body becomes a prison.
No one should have to live in a body that feels like a prison.
For the last ten years, my life has been a constant battle for survival. Every single day has been consumed by pain, exhaustion, fear, and the overwhelming feeling that nobody truly understands what I am going through. There have been countless moments where the darkness became to heavy that I questioned whether I could continue. Not because I wanted to die, but because I simply didn't know how to keep living with this level of pain.
Living with Endometriosis has stolen so much from me. It has changed me as a person. I am no longer the person I once was. Pain has become my daily companion. It dictates what I can do, where I go, and whether I can even get through the day. Alongside this, I am living with a fibroid protruding through my Endometrial wall, causing severe and relentless bleeding. The blood loss leaves me drained beyond words, with little to no energy to function. Iron infusion's needed just to level out my levels. Simple tasks that most people take for granted can feel impossible.
The hospital has also identified polyps, yet nothing has been done. I am left carrying the anxiety and fear of what that could mean for my future. It feels like another burden added to an already unbearable weight. Over the years, I have found myself in hospital at least once or twice every month. Hospital appointments, emergency visits, tests, procedures, waiting rooms, unanswered questions, and endless waiting have become a normal part of my life. Yet, despite all of this, I still feel abandoned.
There are days when my legs feel as though they are about to give way beneath me. Days when the weakness is so severe that I wonder how I am supposed to keep going. My body no longer works the way it should. Even something as basic as urinating has become a struggle. Three times I've been rushed into hospital for acute urine retention and on multiple occasions, I was given a catheter to wear for two weeks. Things that should happen naturally now come with difficulty, discomfort, and frustration.
What hurts almost as much as the physical pain is the emotional isolation. I constantly feel like a burden to everyone around me. I watch people continue with their lives while mine seems frozen in a circle of suffering. I apologise for needing help. I apologise for being unwell. I apologise for things that are completely beyond my control.
The truth is, I never wanted sympathy. I never wanted pity. I just wanted to be heard.
I wanted some to listen without judgement. I wanted someone to acknowledge that what I am experiencing is real. I wanted someone to understand that behind every hospital visit, every cancelled plan, every exhausted smile, and every moment of silence is a person who is fighting harder than anyone can see. People see the outside, but they don't see the nights spent crying in pain. They don't see the fear, the blood loss, the weakness, the constant exhaustion or the mental toll of carrying this for a decade.
For ten years, I have been surviving rather living. And right now, I am struggling. I am struggling to survive this every day. I am struggling to stay strong when my body feels broken. I am struggling to find hope when I feel forgotten by the very people who are supposed to help me. But despite everything, I am still here.
Even on the darkest days, when I felt completely defeated, I kept going. Not because it was easy, but because I had no choice. Everyday that I wake up and face this pain is proof of a strength I never asked to have.
Ten years is a long time to watch your life slowly become smaller while everyone else's seems to move forward. There have been moments during this journey that have broken me completely. Moment where the pain became so overwhelming, so relentless, that I genuinely didn't know how I could continue living with it.
Pain changes you. It changes the way you think, the way you see yourself. It changes the way you see the world. I am not the same person I was ten years ago.
I used to have dreams, plans, energy, excitement for the future. I used to imagine a life that wasn't dictated by doctors, hospital appointments, medications, scans, blood tests and waiting lists.
Living with Endometriosis, Adenomyosis, fibroids, polyps and cysts has taken so much from me. It is not "just bad periods" as so many people wrongly assume. It is a cruel disease that affects every aspect of your life. The impact reaches far beyond physical symptoms and touches every part of your emotional wellbeing.
People hear the word "tired" and think they understand... This isn't tired. This is feeling as though every ounce of energy has been sucked out of your body. This is struggling to stand for even just five minutes. It's staring at simple tasks and wondering where you will find the strength to complete them. This is wanting to participate in life but not having the physical ability to do so.
As you know, my legs are weak at times. Walking can become difficult. Standing can become difficult and yet somehow, I am expected to keep going.
To keep smiling, to keep explaining and most of all... To keep proving that I am unwell.
The emotional toll of constantly having to justify your suffering is almost as painful as the illness itself. I find myself wondering how much more my body is expected to endure before someone truly listens.
What people often don't realise is that chronic illness doesn't only affect you when you're physically inside a hospital. It follows you home. It follows you into your relationships. It follows you into your career, your finances, your social life, your mental health and your future.
There is no switch to turn it off, there is no break, there is no holiday from being unwell. The illness comes home with you every single time.
Chronic illness strips away your dignity piece by piece. You find yourself grieving things that healthy people take for granted.
You grieve your independence. your energy, your confidence and you grieve the life you thought you would have.
Perhaps one of the loneliest feelings is the belief that you have become a burden. I know people around me care, but when you spend years being ill, needing help, cancelling plans, attending appointments and struggling to function, it becomes difficult not to feel guilty.
You start apologising for things that aren't your fault. You apologise for being tired, for being in pain, for needing support and you apologise for existing in a body that is failing you. Overtime, that guilt becomes heavy.
There have been countless moment where I have sat alone and wondered if people would be better off without the constant worry that comes with caring for me. That is the reality of chronic illness that many people never talk about. The physical pain is visible. The emotional pain often remains hidden.
What I have wanted more than anything throughout this journey, is simply wanting to be heard. I wanted healthcare professionals to listen.
I wanted my concerns taken seriously, and my suffering acknowledged. I wanted someone to understand that I am not exaggerating, being dramatic, or seeking attention. I am simply trying to survive. I have smiled through tears, attended appointments while terrified, and pushed myself through days when I had nothing left to give. People often tell those living with chronic illness that they are strong. The truth is, strength is not always a choice. Sometimes strength is getting out of bed when every part of your body begs you not to. Sometimes strength is showing up to another appointment despite years of disappointment. Sometimes strength is surviving.
Every day feels like a fight between the person I used to be and the person this illness has forced me to become. But if there is one thing I want people to take away from my story it is this:
Behind every chronic illness is a person.
A person with hopes. A person with fears. A person carrying invisible battles. A person who desperately wants to live rather than survive.
If sharing my story helps even one person feel less alone, than it has been worth writing. Living with chronic illness can be incredible isolating. There are so many of us suffering silently, trying to navigate pain, uncertainty, and fear while continuing to show up for life as best we can.
To anyone reading this who is facing their own invisible battle. I see you.
And to those who have never experienced chronic illness, I ask only one thing. Listen. Believe people when they tell you they are struggling. Sometimes being heard can make all the difference. After ten years, and still counting, I am fighting. I am still here. Tired, broken at times, frustrated and heartbroken, but I am still here and for now, that has to be enough.
