"Chronic Pain -A Personal Narrative" by Hailey S

 

Let's start off by saying Chronic pain in teens is not really talked about but it's real however it can not be glorified. I need to make myself clear because comments like this have been said and are highly inaccurate, this is not in my head, this is not for attention but to share my learning experience and the importance of ending the stigma with chronic pain because this is an extremely important topic I hold close. Please do not tell me to do yoga or try some herbal treatment from a tik-tok person. I have heard it before and it doesn't work for everyone. With that being said this is my story and what I learned.

 

At 14 I started feeling pain in my hips and having a hard time with physical activity. Noticing these issues I went to the doctor who told me I was being a hypochondriac and sent me home. Fast forward to november/december the pain is becoming progressively worse and having a harder time in PE and getting through my day. I saw a new doctor who was extremely upset that my pain was discredited and could be something that needs attention. With this concern in mind, I was excused from PE until cleared by Sports Medicine which led to me being failed on purpose and that's a whole can of worms so we’ll move on. A condition they thought I had was hypermobility syndrome which being overly flexible and in some cases caused chronic pain. There's a lot in between and a ton of one doctor saying one thing and another doctor saying something completely different, however there was always a constant pain, straight, no holds bar, feels like you trying to get up the stairs after an intense leg day.

During my junior year I passed out after being sick and fell full body weight onto my right knee onto that metal shower barrier thing, leaving a pretty good sized scar. To be on the safe side because I did not go to the hospital due to covid, I went to sports med to get my knee checked and that's when I expressed the continuous pain. The treatments that help hypermobility patients were not helping. Now my doctor believes it's something different but what it is the question. Now I'm undiagnosed and I feel hopeless. They don’t know what's wrong and I'm in pain. A few weeks later my doctor calls and after looking into my medical history and previous doctor concerns. I was diagnosed with Hypermobile Ehlers Danlos Syndrome or EDS-type 3 (yes it's a mouth full). Not going into a lot of detail it's basically a connective tissue disorder causing chronic pain among other things including immune issues (great timing right). Now just recently after going to pain management to find better ways to combate my pain without hard core pain killers, they found signs of Fibromyalgia which is not uncommon in EDS patients. Yes, this is the condition on TV with the medications that have the side effects like: may include liver damage, brain fog, death, psychotic episodes, etc.

Here's the thing, EDS-type 3 is an invisible illness. You can't see my pain and I do not show how bad it can hurt me on a daily basis but it's real and puts me at risk for dislocation because I'm flexible in not so normal ways (I understand it's weird but I embrace the weird it's unique I guess).

Chronic pain in teens is real and we do not hear a lot about it because we're too young to hurt, it's all in our heads, or it's for attention. In very few and I mean few cases it could be, because the stigma has to come from somewhere. It’s real and it's in your face. Just because in

some patients it's not visible, it's still very real and gives you the feeling that how you feel does not matter. Just because you're younger does not mean you can’t have pain and how you feel does matter and having that discredited is the worst feeling ever.

This is a lifelong journey. My condition is untreatable but I have learned a lot. One major take away from this is best described by this Black Widow quote “Pain only makes you stronger” (Black Widows “mom”). This quote is one of the best ways I can describe chronic pain. It can be brutal and it can feel like you're being beaten with a bat all the time but, I made a choice a long time ago not to let my pain determine my life. Instead I will use it to build my character. I will take my pain and help make me a stronger person. Pain, whether mental, or physical, can not determine your life. For a long time I let it and I was not living my life, which is something you can not do, do not let it win a fight. Pain makes you stronger and the more you take control of how you feel the stronger you will become. This may sound repetitive but if I get the point across then so be it. Take your pain and let it make you stronger and become who you want to be.

 

Before I end this, chronic pain is not to be glorified because it's not something everyone this young has but traditional pain is. Whatever you may be dealing with in the end will make you stronger. Looking back what I learned is not that just pain makes you stronger but your life experience makes you stronger.

I’ll leave you with this quote from Twenty One Pilots about pain and I hope that you gained

 

a new perspective on chronic pain.

 

“Fight it, take the pain, ignite it

 

Tie a noose around your mind, loose enough to breathe fine and tie it

 

To a tree, tell it, "You belong to me

 

This ain't a noose, this is a leash

 

And I have news for you, you must obey me"”

 

-Twenty One Pilots “Holding onto You”