‘Being told you’re lying and faking is a different type of pain. For years, I thought I was the only one.’: Chronic illness warrior ‘proud to be disabled’ after 5-year fight for diagnosis

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“The nerves and anticipation made me feel sick. Everybody was watching. My name got called and suddenly, it was my turn to fight. I had no idea this fight would last every day for the next 5 years.

At 14, I was kicked off my feet in a karate match. At 19, I’m still disabled. I’ll never know if that karate match is what caused my chronic illness, but it is the last time I can remember competing as an athlete. The last time I can remember being truly able. We get taught growing up if we get sick, break a bone, or catch a disease, a doctor can help us. I learned very quickly that isn’t true.

I’ll never forget the trips to A&E screaming in pain, with rashes head to toe, heart rate monitors beeping uncontrollably, soaked in sweat and tears. These memories stay with me every day but not just because of the horrific symptoms controlling me daily. Being told you’re lying and faking it when your life is suddenly stolen from you is a different type of pain. You feel like you are the only person in the world medicine has failed to help. Every day hoping that anything — good or bad — would show up on a test and set you free. It felt like every doctor I saw was another obstacle. I got so used to people not believing the suffering I was going through that hiding it and masking it became second nature.

Courtesy of Daisy Hannah Dunne

A couple of years later I finally felt like I was being heard. Every Wednesday, I would push through any symptoms I had to go to Great Ormand Street Hospital for strict pacing and therapy, instead of going to school. ‘Imagine you’re a soldier getting shot at in battle, they keep going through the pain and suffering – why? Because they don’t have a choice.’ All I had ever wanted was my life back. My freedom, independence, and health. I would’ve been anything – including a soldier— if it meant this pain and suffering controlling my life would go away. If it meant I could be a normal teenager again. This mindset had a ripple effect like a storm carrying a deadly wave. It lit a fire within me, fueled me to try harder and harder – like fighting wasn’t enough. I had to prove I wanted to get better.

Courtesy of Daisy Hannah Dunne

Living undiagnosed is a never-ending spiral of suffering, heartbreak, hope, and hurt. It’s a prison of isolation, depression, and imposter syndrome. Treatments like pacing and therapy taught me I would never have worth or validation as a chronically ill person. That pushing through and hiding my suffering was the only way to survive. This couldn’t be further from the truth. In 2019, I started Graded Exercise therapy – another form of strict pacing. Unfortunately, I didn’t know better. I thought I had lost more than most people by 16 would ever lose, but I was wrong.

Courtesy of Daisy Hannah Dunne

There were many times when I thought that my life was close to being ‘normal’ again and because of this, I began doubting myself more and more. I thought I was crazy. I would lift the heaviest weights I could, run as fast as I could and then collapse in bed hoping that the next day, I’d be able to push myself harder and overcome any symptoms standing in my way. If only I knew then you can’t overcome a multisystem disease by exercising. If only the doctors knew just how much Graded Exercise Therapy would have deteriorated my already declining health.

Courtesy of Daisy Hannah Dunne

‘When you’re 80, you’ll look back on all the time you wasted being sick.’ Part of me always hoped one day I would look back on all of this with validation and strength, to be able to say, ‘I survived’ instead of ‘I’m still surviving.’ I joined a stretch group in 2019 run by a person with a chronic illness and suddenly, I found the light in the darkness. I wasn’t the only person the medical system had failed or the only one undiagnosed. I found my second family and for the first-time true hope. Not a hope of a cure or being healthy again but the hope of having a quality of life.

Courtesy of Daisy Hannah Dunne

Like many people, the coronavirus pandemic has affected a lot of my daily life. Being chronically unwell and undiagnosed for 5 years is one of the hardest battles I thought I’d ever face. In May 2020, I was diagnosed with M.E. and a lot has changed since then. Getting a diagnosis of M.E. or any chronic illness isn’t easy but one of the hardest things to face is what comes next. M.E. is such a complex and misunderstood, multisystem disease that even getting a diagnosis comes with more attitudes, stigma, and well, no treatments. I thought when I got diagnosed, all the imposter syndrome and medical gaslighting would disappear. Unfortunately, M.E. is one of the largest most unheard-of diseases to date.

Courtesy of Daisy Hannah Dunne

For years, I thought I was the only one but today, I am one of the millions.

One of the millions missing from what could have been,

One of the millions missing from everyday life,

One of the millions housebound and chronically unwell,

One of the millions forgotten by medical professionals, research, and society.

One of the millions missing, surviving, and living with M.E.

Courtesy of Daisy Hannah Dunne

Beginnings are usually scary, and endings are usually sad but it’s everything in between that makes life worth living. Don’t give up because of the suffering you’re facing today. Someone might be watching your story, learning from your mistakes, and receiving the validation and love that they need to keep going too. The visibility or label given to a person’s condition doesn’t determine their worth or right to treatment. It’s been a long battle of acceptance, belief, and validation. Although most of these experiences will stay with me forever, they no longer define me but drives me.

Today, my weaknesses and challenges give me a purpose. It is a struggle of suffering and surviving, grief and hope, but I am proud to be one of the millions missing, and I am now proud to be disabled.”

Courtesy of Daisy Hannah Dunne

This story was submitted to Love What Matters by Daisy Hannah Dunne of London, UK. You can follow her journey on Instagram and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories from chronic illness warriors here:

‘At 9:00 a.m. Thanksgiving Eve, my phone rang. ‘It’s time.’ Nothing could have prepared me.’: Chronic illness warrior receives life-saving liver transplant after triple diagnosis 

‘I lost control of my legs. ‘Call an ambulance!’ My tongue started to go down my throat. The pain was excruciating.’: Chronic illness warrior shares journey with fibromyalgia, POTS

‘You’re a LIAR. Suck it up!’ I was in the fetal position on the floor, SCREAMING.’: Chronic illness warrior talks health, support system, ‘Keep fighting and listen to your body’

‘I lived a double life, high schooler by day and patient by night. I hid my illnesses out of pure embarrassment.’: Chronic illness warrior shares self-love journey, ‘Now I embrace my scars’

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