What I Need You to Hear If You Don't Understand Being Young With Chronic Pain

It’s relentless. It’s constant. It gets worse but never gets better. This is chronic pain. It’s my new normal, but something that nobody seems to understand. My chronic pain is something only I will truly understand. Anybody with a chronic pain condition knows what I’m talking about. It’s that type of pain that never stops.

I can be fine and smiling in front of everybody but inside, I’m screaming. It hurts like no other pain I’ve ever experienced before. It makes me wish I never got sick. Nothing is like it, nothing can be compared to it.

When I got sick in August last year, I never thought I would be diagnosed with a chronic illness. The pain started in my hips and almost landed me in the hospital because it was so severe and I had a fever. About two weeks after I recovered from a bacterial infection, the pain spread to my shoulders and my wrists. Doctors ran tests, and sent me to a rheumatologist. I was diagnosed with rheumatoid arthritis two months later.

My life went from being a happy, “normal” 24-year-old to being someone who can barely make it out of bed some mornings. I have constant fatigue and can barely move some days. It hurts to do the simplest things. I have to lie down after taking a shower because it just takes too much energy. I inject myself with chemo every week and drink meds that have potentially serious side effects just to be able to function each day. Having rheumatoid arthritis means my life can be shortened up to ten years.

I’m living my life in two separate worlds. In one world, I’m still the functioning young adult who tries to live life despite my illness. This is the healthy world where I just look OK but nobody understands what I’m going through. Then, you get the sick world, the world of meds and doctors and those nights I’m stuck alone with the pain and nothing relieves it. The things that only I understand. The world that remains hidden from others. The world you’d only see if you turn my body inside out.

Chronic pain is that part of you screaming out to be heard, but you don’t have the voice to tell people how much it hurts. Chronic pain becomes a part of you, no matter how much you try to deny it or how much you want it to end. It becomes your “normal.”

My story is not a fairytale. It isn’t something that’s going to end someday. It isn’t something that can be wished away or taken away by diet or prayer or any type of silly home remedy that doesn’t work. My story is true. It is my honest account of how much it hurts.

People with chronic pain need a voice. We need the strength to really tell people how we feel, no matter how much they are going to judge us. We don’t only need a voice; we need people who will tell us that they believe it, that we are not alone. Believe it or not, we’re all in this together. My hope for chronic pain patients is that they find the right support and treatment and they will fight for their right to be heard.

So, if you struggled to shower today; if you can’t get out of bed because the pain is so bad and you don’t have the energy to get up; if you’re crying at 2 a.m. because you can’t handle the severity of your pain anymore, I just want you to know you’re not alone. Everybody deserves to tell their story. Everybody deserves a chance to be heard and get support.

My chronic pain may never end; it may hurt for the rest of my life. There may be days I wish this never happened to me, and I can’t say I’m happy it did, but I know I deserve to be heard. We are all warriors, fighting battles nobody sees or understands. I see you. I see the ones who sit behind closed doors crying because the pain is so bad. I see you. This is our battle, and nothing anyone says will ever keep us from fighting. It may not get better, but at least you’re not alone. This is my story.

It’s hard to live with a chronic illness, especially in today’s society. People today expect that when you get sick, you will get better; they have no grasp of what a chronic illness is. This makes it hard to explain my symptoms to people who don’t have a clue. My life with rheumatoid arthritis is already hard enough without the constant judgment from people, saying it’s my fault and in some way, I made myself sick. The truth is: this illness came out of the blue. I did not cause it.

I’ve already experienced so much judgment from strangers and my family. It’s hard to live with people who don’t understand what you battle every day. It’s hard to live with people who believe that you will just miraculously get better. People who have no idea, people who judge your battle or don’t believe that you can be in this pain are the ones who are the hardest to live with.