By Charlie
I'm Charlie and I am 35 years old and have been a patient in one way or another since I was 18 years old. It first started with back pains and numerous trips to the doctors over the years to be told I was too young for back problems.
Diagnosis
After much frustration I was given an MRI which showed I had a slipped disc and spinal degeneration which although it was a shock, I felt relief that there was actually something wrong with me and it wasn’t all in my head. I have had treatment after treatment, none of which has been successful and I live a life of chronic pain.
In 2014 I was diagnosed with severe chronic fibromyalgia. I had no idea what this was, all I knew was I was always in pain and my legs would feel like lead. It was like I was trying to wade through treacle when walking and it was awful. There was finally a reason for the pain, the numbness, the chronic fatigue that no amount of sleep or rest will cure.
Mental Health (TW: Suicide)
I have suffered with my mental health from a very young age but have since been diagnosed with CPTSD, Depression, anxiety, psychosis and borderline personality disorder. That's when the discrimination started. Health professionals seem to have no time for people with BPD and it has been a fight ever since to have my symptoms taken seriously rather that everything be blamed on the BPD. A fight I am still fighting as my symptoms no longer fit the diagnosis but trying to get an appointment with a psychiatrist is like trying to get blood from a stone. They refuse to give me a review. Even when I was in a psychiatric hospital I wasn’t taken seriously and they didn’t recognise the trauma and released me even when I was still actively suicidal.
Impact
I had to give up work in 2016 because my health was too much to manage and work just wasn’t sustainable anymore. This was absolutely devastating for me and I became very depressed and suicidal because I felt defective. I was no longer contributing to society. People think it is so easy to just sit at home 'doing nothing' but if only it was that simple. Having to deal with the mental health side of things as well as the physical. The constant fatigue, pain, having to use mobility aids. The endless appointments where you have to try so hard to be heard rather than it just being brushed under the carpet. The endless suffering that no one seems to care about. I am on so many medications and then having to navigate the side effects of those and then taking meds to counteract the side effects from the other medications. It's just an endless traumatic cycle that never seems to end. If only people knew and understood what we really go through on a daily basis.
Me
I am a fighter, I always have been but patient life is hard. Most of the time you feel like you are speaking to a brick wall, that no one really cares or actually wants to help you and despite all the suffering, you still feel like you're making it all up because that's how you're treated by professionals. Invisible illnesses and disabilities are frustrating as no one can see what's going on inside, you're automatically judged, people don’t give up seats. They see you walking one day and using a wheelchair the next and you're accused of faking it.
That Patient Collective
That's why I have chosen to be a part of this amazing project, to change the way we are seen and treated. To make care more accessible to others and to be believed. Changes need to happen and they need to happen now. I will continue to fight and advocate for as long as I possibly can. I try to make the best of what I have, the snippets of enjoyment I experience is what helps keep me going.
Comments