"Being A Young Person With Myalgic Encephalomyelitis"

About: South Yorkshire and Bassetlaw

(as the patient),

I began experiencing the symptoms and early stages of ME/CFS when I was around 15 years old. Though I saw my GP (and several other GPs for a second opinion) many times throughout the next few years, it seemed as though effort was made to deliberately rule out an ME/CFS diagnosis. Instead, I was told things such as 'it's just hormones and part of growing up' and 'you're probably just stressed about your exams' and 'go for a hour-long walk every day to improve your fitness levels'. Because of this, I internalised the belief that my symptoms were my own personal fault, rather than a medical condition. That's hard to take in when you're a teenager, especially a happy and very sporty/ physically active one.

My condition gradually worsened and 5 years after my first symptoms, I experienced a massive relapse and became housebound, unable to walk for more than a few minutes at a time. After this point when it was undeniable that something was wrong and it wasn't just me being a 'typical teenager', I finally got my diagnosis and referred to a specialist service. Though the service I use is massively over-subscribed and would benefit from much more funding, my experience since my referral has been mostly positive. I now have a wonderful understanding GP at university and medication and pacing therapy to help me mange my symptoms.

The point I want to make is that the severity of my condition now could possibly have been prevented by earlier intervention, as I could have avoided completely burning out and feeling as though I was responsible for my condition. I would love to see more GPs recognising early symptoms and providing appropriate support, rather than ruling out a persons' symptoms just because of their age. Mostly, I would personally advise against encouraging a person in the state I was in to exercise more without any monitoring or investigation, as I believe this is what harmed me the most.

I am very happy to discuss my experience and thoughts on how to improve the treatment of this debilitating, yet still massively misunderstood condition.

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