Sleepy woman resting her head on her hand with her eyes closed

What is it Like Living With Chronic Illness

A young person living with CFS/ME her experiences

Mental health and wellbeing
By VoiceBox ·

Millie-May Carter

My name is Millie-May Carter and I'm a secondary school student in Cornwall, England. I suffer from CFS/ME and I am passionate about advocating for accessibility and equality for disabled people. Feminism, LGBTQ+ rights and the school system reform movement are also important to me.

My Experience with Chronic Illness

What is it like to live with a chronic illness? An important but rarely asked question. Most people don't even know what a  chronic illness is – neither did I until I developed one. 

What is a Chronic Illness? 

Chronic illness is defined as a long-term condition with the ability to be treated but never cured. This can be an illness you are born with or one you develop later in life. Some chronic illnesses are genetic, meaning they are passed down through families. This is common but does not apply to all chronic illnesses. I have Chronic Fatigue Syndrome (CFS/ME), which is a post-viral syndrome rather than a genetic one. This means that it's a result of a viral illness –  for me, it was the common cold. Long COVID (which has been prevalent in the news recently) is another example of a post-viral illness.  

There is a large overlap between chronic illness and disability,  although the two terms are not synonymous. Chronic illnesses can cause disabilities, but not every chronically ill person is disabled. Like many people with CFS/ME, I am both chronically ill and disabled. 

Becoming Chronically Ill 

I would never have expected a simple cold to change my life in this way – why would I? ME/CFS is not something that anyone can predict or prepare for, but it is possible to adjust. Previously to developing CFS/ME, I was an athlete, preparing to compete in a national rowing competition. I was even on track to achieve gold.  Then I got a cold, and it was all over. Which seems like a foolish sentence, but it's the truth.  

Suddenly I was exhausted all the time, and it was only worsened by my newly developed insomnia and severe chronic pain. Within months, I was bedridden. However, by this point, we were in the peak of the pandemic, and the entire UK was in lockdown. No one was going out to socialise or exercise as usual, and that included me. The fact that I wasn't participating in all my usual activities made the warning signs near impossible to detect. Doctors dismissed my symptoms as the 'lockdown depression' that many were facing at the time. The pandemic prevented me from seeking any further help, so there was little else I could do. 

Getting a Diagnosis 

Eventually, we were nearing the end of the pandemic, and things were opening back up. Immediately I was at the doctor's,  requesting tests and investigations – anything that could tell me what was going on. All of my tests came back normal, and so commenced the next stage – specialists. I was referred to a whole host of specialists with varying lengths of wait lists. I waited nine months for my first specialist appointment. Each doctor conducted their own examinations and concluded they did not know what was wrong with me. 

Another few months later, there was a turning point – I saw a  paediatric specialist. She took over my care and remains, to this day, the best doctor I've had. We discussed my symptoms, and she suggested a full cardiac workup before we tried anything else. 

The cardiology wait list was three months long, during which I began to research my condition. That sounds a lot more refined  than it actually was; I really just typed my symptoms into Google 

(do not recommend it – you will freak yourself out). The internet insisted that I was dying (I wasn't) or that I was a hypochondriac  (also incorrect). 

Giving up was beginning to look like a good idea,  but then I came across CFS/ME. As I previously mentioned, the concept of chronic illness was new to me. Yet, reading the NHS criteria for CFS/ME, I understood every word. I had experienced every symptom on the list. Even the timeline and development of the illness fit perfectly. During my next appointment with the paediatrician, I explained my discovery to her and (shockingly enough) she agreed and referred me to the CFS/ME treatment clinic. For those of you wondering why I was surprised by the cooperation of my doctor, the healthcare system is renowned for neglecting and mistreating chronically ill patients. 

Leaving the hospital after my diagnosis, I had mixed emotions. On the one hand, I had been correct, and I finally had the answers I'd spent two years searching for. On the other hand, I was well aware of the prognosis for the disease. Chances of recovery for CFS/ME  are roughly 20%, but early diagnosis and treatment are the key, and I had neither of those. This reduced my chances to pretty much zero. I'm sure this sounds like hell to many people, and a couple of years ago, I would have agreed with you. However, I am at peace with my illness, and I'm learning how to adjust and live with it. The more I adapt, the more I realise that it isn't as bad as it seems.  

Thanks for reading – I hope you learned something.

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