This letter is based on my lived experience which may not be the experience of everyone. It is addressed to one particular team of doctors I went to, but shows experience I had with most doctors I came in contact with, but not all. I have met some amazing people who have helped me get to the place I am now. I have faith that there is a better way to care for people because of these amazing people. They give me cause for optimism and show that it is possible to make a difference as an individual even while functioning in a broken system. We have a responsibility to each other simply as humans and we cannot forego this responsibility to the system. However, that doesn’t make the need for systematic change any less real.
My name is Orla Murphy. I am 17 years old and I’ve had chronic fatigue syndrome for almost 3 years now, but I didn’t know that back in 2016 when I was in your care. I had neck swelling, and I was lucky I did, because having a physical symptom gave my case some form of legitimacy, but it was still ambiguous.
In 2016 I was 15. I had symptoms that no one could explain and I was missing a lot of school. During that time I came under your care. You did the tests you could think of and when they didn’t give you any answers you shrugged my case off and moved on. I was 15 and, for what seemed like no reason, my body was breaking right before my eyes, but you couldn’t see that. It didn’t matter what I said (or what my mom said) you didn’t believe what you couldn’t see.
I don’t blame you. I can’t live with hate but that doesn’t mean I can ignore what happened and the part you played in it. I acknowledge that our system is broken. You are working in a broken system and that’s tough. It’s not solely your fault but that doesn’t excuse your behaviour. We have a responsibility to each other and when you are in a position of power and dealing with a CHILD, even more so. You lacked curiosity and compassion and that means you failed as both a carer and a scientist.
I’m not writing this letter as revenge. I am writing this in the hope that you can learn from this. I am writing this to say what I couldn’t say when I was 15. I deserved better. What you do has an effect beyond what you can see. What you say has an effect beyond what you can see. I was discharged from your care but that doesn’t mean I stopped existing, hurting or feeling. The simple act of caring, of listening and hearing would have had a huge effect on my well-being.
I understand that treatment and answers are limited for patients with illnesses such as chronic fatigue but compassion should not be limited. I understand that you see a huge amount of patients and it must seem draining to care about someone you will probably never see again, but for us, your patients, I would ask you to remember that our story doesn’t stop with you, our lives go on beyond what you see and we are people, vulnerable people who are scared, confused and lost. By simply acknowledging that, you can have a huge impact.
I’m still sick. My neck still swells up and I will never forget my experience in your hospital. I will never forget one of your team saying “maybe that’s just you now” when the tests failed to show the cause of my symptoms. This comment showcases the complete lack of care, compassion and even curiosity you showed me. Your attitude is within your control. We all have off days and say stupid things but this was more than just a thoughtless comment. This was the attitude I was shown by the actions of you and the “team” time and time again.
I want you to know that I had to drop out of school twice. I want you to know that I lost friends. I want you to know that I developed depression. I also want you to know that I’m a determined young woman and I will fight with as much grit as it takes to get to where I want to go. I want you to know that I won’t give up. I got to this place largely because of the support of people – my counsellors, my psychiatrist, my GP, my friends my family and every person I meet who cares enough to listen. You mightn’t think your actions matter, that your small role can’t possibly have an impact but they do and it does. So please just care. Just treat people with respect, just do your job, because we’re just as human as you are, but we’re struggling and we need your help to flourish.
Be the change. Be the difference. Make some small talk, look us in the eye, ask how we’re doing. Every little thing helps. It’s the simple everyday things that you think are insignificant that make the real difference. Systems are made up of people, yes structural change is hard but we can’t blame everything on the system or on ourselves. So don’t blame yourself, just do better, be better, live better and enjoy your health because believe me it is precious. I am angry. I am hurt. But my justice is your change and it’s your justice too. We deserve better and the only way to get there is to be better. We can’t always be the people we want to be, but we can try, we can try to be kind, respectful, honest and caring. We can try and be better.
That’s what I needed to say and what I needed you to hear,