‘I can’t go out. I’m too tired.’ They laughed, ‘You’re always tired.’ I’ll be sick for the rest of my life.’: Woman with chronic illnesses raises awareness, ‘You have nothing to be ashamed of’

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“I was 16 years old. I was starting to come out of my shell, live life, have fun, think about my future. And then one day, my life changed forever. I became ill, only it never went away.

I was an academic student. Expectations from my school, friends, and myself led me to choose subjects that would lead me to study medicine at university. ‘Why not?’ I thought, ‘I like helping others. Maybe being a doctor would be good for me?’ I began doing extra work, getting work experience, at GP surgeries, GP perceptions, hospitals, community work, all while studying for exams. Normally, I could keep up, but I became increasingly tired and needed to take a lot of naps. Once I got my mock exam results back (and they weren’t good), I was constantly stressed, worrying about the future and what others would think of me. That feeling in my stomach of nerves, nausea, and pain became a regular occurrence, only one day it didn’t go away, and it just got worse.

I kept having diarrhea, loss of appetite, and nausea, but I ignored it and going to school. Eventually, I had to take time off. I visited some doctors. They all told me I was okay, just stressed, and I believed it. I was 16. I thought I was fine. I wasn’t aware young people could get ill too. So I went back to school, but every morning before the bell rang, I spend my time on the toilet— sweating, crying, having diarrhea, not knowing what was wrong. I was scared.

One day, the pain was excruciating, my fever was high, my clothes were soaked with sweat, and I was vomiting a lot. I couldn’t get out of bed for months. My body had crashed. My symptoms continued to get worse. I started developing horrendous headaches. I lost nearly 20 pounds. My period stopped. This went on for months. I wasn’t going into school, I wasn’t seeing anyone. I was teaching myself my A-levels at home. I had to give up on the idea of studying medicine, and just try to get through the year. Every time I tried to go to school, the pain was too bad. I would just call my parents and say I had to come home.

Courtesy of Niamh

My GPs were insisting I was okay, but my family helped finally push a referral to a gastroenterologist. 7 months after my symptoms had begun, I went to gastroenterology. The doctor told me straight away he knew I was ill, I had a yellow pallid complexion commonly seen with inflammatory bowel disease. He booked an emergency endoscopy and colonoscopy for next week, in the middle of my exams. I cried in front of him. I was sobbing, shocked.

Getting the colonoscopy and endoscopy was horrible, and a week later the hospital called me saying they need to speak to me. I knew what that meant. They sat me down and told me the results. I had inflammatory bowel disease, an autoimmune condition in which your new system attacks the lining of your digestive system. In my case, Ulcerative Pancolitis, the whole of my large intestine.

My immediate reaction was happiness. I thought, ‘Finally, I know what is wrong after so long.’ I felt validated and knew I would take medication that may help me. In the next few weeks, though, it sunk in. My medication may help me, but they will never cure me. I will be ill for the rest of my life. My life had changed completely. I started to develop bad anxiety about my symptoms, about leaving the house, about my undiagnosed severe headaches, about everything. I kept having panic attacks. I was finding it hard to process it all. A few months later, I was also diagnosed with chronic migraine disorder. To this day, I have not found a successful treatment for my chronic migraines.

Going back to school in September was really hard. I used to wake up early, hang out with my friends after school, and be out for 12 hours a day. Now, by the time I got to school at eight a.m., I was exhausted. I would just find a quiet room or corner of the study area to close my eyes, take some medication, and get ready to get through the day. I kept having to take toilet breaks during classes, I found it hard to focus and concentrate. I just wanted to lie down. I had to go in part-time while I was being treated for IBD, having brain scans, trying different medication for my migraines, under investigation for my absent periods, and having therapy because of my anxiety.

That year, I had to apply for university, I was confused about what I could do with my life when I was still so unwell. My peers were applying to high-ranking, faraway universities to study degrees I knew I couldn’t cope with, like law, medicine, engineering, and nursing. Eventually, I decided to apply for music. I’m a violinist and pianist and have been since a child. Music has always been a large part of my life. I knew it was a good choice, but others said, ‘Why would you choose music when you have so much potential?’ I became doubtful and second-guessed myself. But in the end, I made the choice for myself and my health, to apply for a music degree.

For a period of time, I got better and my first year of university was enjoyable. I still could not fully integrate into university life. I can’t drink, I couldn’t party a lot, and my illnesses still caused me a lot of pain. Still, I made great friends, great memories, and had great support from my well-being team. I remember someone asking me to come for a drink once at 9 p.m. to which I honestly replied, ‘I can’t I’m too tired.’ They said, ‘You’re always tired,’ and laughed. They didn’t realize how right they were. People may have seen me as a boring, quiet, and unsociable one, but I was really just trying to juggle illness and University at the same time.

My second year became harder. The days were longer and more exhausting. I remember one month around Christmas time was really tough. We had orchestral rehearsals 8 hours a day, 5 days a week for an intense week of theatre shows. The healthy students found that tiring, let alone me! I had to miss more rehearsals than most, which I think sometimes came across as me not making an effort. I was actually working really hard, and unable to sleep most nights from pain. Throughout that year, people would often ask me to join more ensembles, more groups, and more societies. I had to learn to say no, but it still hurt every time.

Courtesy of Niamh

That year I also started to develop new symptoms— dizziness, blood pooling, low blood pressure, and palpitations. I thought it was just related to other illnesses. But this year, I’ve been told I have may have dysautonomia, and am currently under investigation at an autonomic neurology clinic for post-automatic tachycardia syndrome. I remember telling my neurologist nurse this year about the symptoms, and she said, ‘That’s not normal for someone your age.’ I realized I’d been used to feeling unwell for so long, but I had not noticed myself getting worse.

I was proud of myself though, in my final year, I held and planned my own recital as a final project, and I graduated with first-class honors. I remember on the day of graduation it was 102° F (hot weather is really bad for all of my symptoms), but everyone was cheering in the hall. Everyone was hugging, saying goodbye, taking photos, and I remember silently thinking – I made it. I actually got through it somehow. During that year, I was also diagnosed with PCOS and told my weight was far too low, and needed to increase quickly. Looking back at earlier pictures, I can see how underweight I was.

Navigating the working world has been hard with chronic illness. I’ve taught music and done performing work, but I’ve also had to turn down and carefully consider many opportunities to put my health first. That’s been tough. Being chronically ill takes your health, but not the dreams and desires you have always had. Accepting my illnesses, the impacts and limitations they’ve caused on my life, has been and still is difficult. But over the years, I’ve realized you can still set your own goals and choose your own part of chronic illness.

Courtesy of Niamh

You are still worthy, deserving, and capable of your own achievements. I proved that to myself when I performed on the BBC earlier this year. It was even televised! I felt unwell during the long days of rehearsal and performing, but I didn’t regret it. I’ve gone through most of my late teens and early 20’s hiding my illnesses, telling myself I wasn’t going to be able to have any kind of life I wanted. But when I came home and saw myself on TV, I realized that wasn’t true. I know my illnesses and disabilities will limit my life. They will make it more difficult, painful, and tiring. But now, now I know they do not mean I can’t accomplish anything. They do not wholly define me, they do not mean I am worthless, a burden, or a lost cause.

Starting my Instagram in 2019 was a turning point for me. I started the blog at a time when I was feeling alone with what I was going through. I wanted to connect with others going through the same things and let out my emotions about it all. What I didn’t realize, though, was just how large the community would be, how many people with chronic illnesses, invisible illnesses, chronic pain, and disabilities are out there, facing misconceptions, lack of support, and societal barriers. I have become incredibly passionate about raising awareness and changing perceptions of chronic illness and disability. I’ve loved creating my own content, connecting with others, working with and writing for many organizations and charities. More than anything, the blog and the people I’ve come across have helped me grow the confidence to share my story, and love myself with my illnesses.

For so long, I hid my illnesses from others. Afraid of what they may say or think of me. Afraid they would see me differently, or in a negative light. There’s no denying talking about illness is hard, especially when awareness about these types of illnesses is lacking, but I’ve come to realize all the energy I’d spent hiding them, for fear of others’ opinion, was wasted. My illnesses are not my fault, and if anything, those with chronic illness should be so proud of themselves. Not ashamed. My journey has been invisible, but it has been there, every moment since I was 16. The one thing so many of us want people to understand about chronic illnesses is, even on days when we are out, smiling, making jokes, and laughing, we are still unwell. Now, as I’ve been more open about my journey with others, I feel closer to those I tell and more confident and comfortable in myself.

For those of you going through chronic illness, invisible illness, chronic pain, and disability, I will tell you what I wish the younger me had known. It can be good to tell people about your illnesses. It can actually make it easier, as the famous quote says, ‘Those who mind don’t matter, and those who matter don’t mind.’ You are not alone, it’s okay to feel low, anxious, and emotional about your illnesses and your future. You have nothing to be ashamed of, and although your life will, at times, be tough, you can still build something wonderful in it. You can, and will, find a way with your illnesses. I promise you.”

Courtesy of Niamh

This story was submitted to Love What Matters by Niamh Gibbs. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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