As this blog series comes to an end, I want to share some final thoughts with you. First and foremost, I want to thank anyone who has taken the time to listen to any part of my story, and hear my perspective. I truly hope that you found something interesting or valuable.
I am so glad that I can be a voice for kids growing up with chronic pain, however I want to acknowledge again that I do not speak for everyone. I also want to say that writing this series has been an emotional and vulnerable thing for me to do. That being said, I feel it is so important to share, so that other kids don’t feel so alone. I remember feeling so absolutely lost. I felt so much shame for the thoughts and feelings I was having, because I didn’t think they were “normal”. I was ashamed for having such a hard time, and for not having figured things out yet.
I wanted more help, but I didn’t know where to turn to. I thought I was too young to be feeling this way, and I didn’t know how to communicate about it with other people my age.
This writing process has been so rewarding for me. It has allowed me to look back on when I was first diagnosed with chronic pain, to where I am now, and I am so proud of myself. I am no longer laying in a puddle of despair, however I also refuse to minimize what I go through. I have learned how to listen to my needs, how to handle disappointment, how to stand up for myself, how to be patient, and also to remember that many people suffer invisibly, whether from chronic pain or for other reasons that we cannot know or see. I have been in pain for my entire teenage life. That is crazy for me to think about, but that is my truth.
I would like to add that what I have written is only part of my story. There are so many levels to the ways that pain affects me, and the ways I have adapted to and grown from it. I have spoken about some hard truths, some of the positive ways I look at things, as well as some of my personal tips and tricks. I hope that in the future I can continue to share my story, and that youth perspective of life with chronic pain becomes more accessible to the world.
Throughout my work with Every Child Every Time, I have had the opportunity to meet many amazing people who are working in the field of paediatric pain. Before this experience, I had long given up most of my hope for any improvement in paediatric pain care. After learning more about the various organizations and initiatives that are out there, I am feeling hopeful again. We NEED more resources and platforms that are made for YOUNG people who live with chronic pain.
This starts with patient engagement and advocacy. It starts with listening to us about what needs are not being met. It begins with resources that aren’t meant for adults, who have completely different life problems than us. It begins with making sure that kids do not feel alone. Making sure that kids feel like they are supported, and that there is someone there who is going to keep helping them until they find things that work for them. It begins with letting kids know that they are believed, and that all of their feelings are valid. It means making sure that kids know about all the options that are out there for them already. There is lots to be done, so let’s get to work!
If you would like to learn about current organizations, initiatives and more, feel free to check out some of the links and resources on Every Child Every Time.
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