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How I Finally Found My Voice as a Teenager With Complex Regional Pain Syndrome

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In life, you may have to go through things that you never thought you would have to encounter. In the 16 short years I have lived on this earth, I have been through more than what the “average” teenager has been through. Many teenage girls may be focused on homecoming dances, boys, drama, and makeup, but I’ve had to think about so much more as a teenager. My name is Maddie, I’m a teenage girl, and I live with chronic pain.

When I was 9 years old, I was diagnosed with juvenile idiopathic arthritis (JIA). JIA is a type of autoimmune arthritis that can cause joint swelling, stiffness, weakness, and fatigue. This diagnosis was just as much a shock to me as it was to everybody else.

Fast-forward a couple of years to my freshman year of high school. I went to what felt like a million doctor appointments. I got poked, prodded, and even misdiagnosed because of this severe pain in my legs. This pain wasn’t just an “arthritis ache.” This pain turned out to be complex regional pain syndrome (CRPS). This is a super rare nerve condition that can be severe and that causes your spinal cord to misfire pain signals to your brain — making everyday tasks like putting on pants hard to do because the pain can be so intense.

This condition doesn’t just stay in one place — it can spread to everywhere in your body. My CRPS started in my legs but is now in my arms, back, and stomach. This spread of this disease did not happen overnight. In 2021, I had three major spinal cord surgeries. The main point of the surgeries was to help my nerve pain from complex regional pain syndrome and give my body some relief. But the surgery failed. In fact, it caused me to be in even more pain everywhere in my body.

The surgery made me so weak that it made my legs go numb — causing me to fall. It caused me to be sensitive to touch. Now, hugging anybody hurts because the pain still is so intense. I also stopped wearing shoes and socks for two years because the sensation that it brought me was sickening. I had to retrain my brain to wear shoes and socks again, and I still have days when it is hard to put my shoes on. If you think this sounds like a living nightmare, know that this is just my reality. If I am being honest, I don’t remember the last time I was not in pain. I don’t remember that feeling of being free from pain, which is so devastating to me.

The first nine years of my life, I lived like an able-bodied child. I learned to ride a bike, learned how to read, and jumped in the leaves every fall. I was a pretty athletic kid too, and my main sport was — and still is — soccer. I can’t play soccer now because of my health, so I am the team manager. Before that, I played soccer for about 10 years. Managing a soccer team is definitely not the same thing as playing soccer, but I am just so thankful and lucky to still be able to be a part of the team in any way I can.

I was a shy kid growing up. If you saw me even when I was 13 or 14 years old, you’d see that I was still timid. I wouldn’t speak up for myself. Doctors would want to run all these tests on me, but I wouldn’t speak up — even if I didn’t want a new test or medication. I felt like a lab rat — constantly getting tested for medical conditions and constantly trying new medication to help relieve the intense pain I experience.

Well, that stopped in 2021. I finally got so tired of constantly doing new tests and procedures that I had had enough. I learned a lesson that I value so much now: I need to speak up for myself. This lesson truly changed me as a person.

In 2021, I had three spinal cord surgeries — all of which failed and had complications. The first surgery was a trial run to see if the actual surgery would be beneficial. If you ask me, the surgery helped relieve my pain by about 5 percent. But let me tell you, that procedure was something I will never do again — even if it had worked. It not only took a physical toll on me, but it also took a huge mental toll on me. The doctors said we had a choice: We could either decide to do the “real” surgery or not do it at all. At the time, I didn’t know what I wanted to do. I was so desperate to maybe find relief from my agonizing pain. I ended up doing the surgery because I felt like I didn’t really have a choice.

In June of 2021, I had the second surgery. It wasn’t even a week into recovery when I thought to myself, “Do I really want to live like this?” Right after my second spinal surgery, I knew something didn’t feel right. I knew that my back would be in pain because that’s where they did the surgery, but this pain was so much more intense. I don’t talk about this time often and want to forget it because this was probably the most pain I have ever been in in my entire life.

After about six weeks of not being able to bend or twist because of the surgery, I started having major complications. I remember one day in July, I was kicking a soccer ball around, and out of nowhere, I fell — and my legs went numb too. I was frightened by this because I had never experienced that sensation before. I went to the doctor, but this was the first time in my life when I realized that I was the only person who understood what I was experiencing in my body. I was fighting my demons silently — and no one saw. I would act “fine,” but I was feeling very badly.

After that, we went to the doctor. I was so mad that this “last resort” just wasn’t working for me. I remember going into the doctor’s office and saying, “This isn’t how I am supposed to be. I am supposed to be further along in my recovery process by now.” The doctor said that I was still hurting at this point, it would be best to undo what he did.

I went for my last and final operation on my spinal cord in August of 2021. I felt hopeful that I was maybe going to be free from the horrible, gut-wrenching pain I was experiencing because of my surgeries.

After my third and final procedure, a couple weeks went by, and then my back hurt worse than before. It turns out that my regional pain had spread all over my body. My hands developed tremors, I became very weak, and I couldn’t even bend over. I even lost all of my hair because of the stress I felt. The pain was the most heartbreaking thing I ever experienced. I lost all hope, and I didn’t know what to do. I wanted to just wallow and be free from my pain, and I wanted to be done trying. But I realized that I really had to dig deep and climb out of the hole I had buried myself in during that time.

Then in November of 2021, I decided that I had enough and staying quiet was not an option anymore. I couldn’t just lay in bed and not do anything. I decided I need to spread awareness on my social media and wear my orange CRPS ribbon to school every day for Complex Regional Pain Syndrome Awareness Month. My disease is so rare that nobody at my school even knew what CRPS was, but I still felt supported. The whole junior varsity basketball team wore orange for me one day, and my club soccer team even wore orange for me too.

Now in 2022, I have the opportunity to speak to kids with chronic illness. I was asked by one of my doctors because she knew how passionate I am about helping kids like me who have chronic conditions. I immediately said “yes.” I started speaking to kids with chronic pain in January of 2022 and I have spoken every month since then.

When I speak to these kids who have chronic conditions, I tell them how important it is to find their voices and speak up for their medical decisions. Finding your voice can allow you to be an advocate for yourself. I have learned over this past year dealing with the surgeries and spreading of my disease that I am the best advocate for myself. You only get one body, and how you treat it is up to you. I teach these kids to not let other people walk over their decisions about their bodies. I tell them about my story and how I once got walked all over and how that isn’t OK. I teach them that it is OK to speak up.

I don’t want any kid to have to be in my situation. I don’t want kids to have to feel what I felt during my years of procedures. In fact, nobody should have to feel what I felt during that horrible time. I want to let kids know that they are not alone in their experience with chronic pain. I know that talking to these kids has made me feel less alone. Talking about one of the darkest times that I thought I would never overcome has helped me get through my internal battles.

In life, I believe that the experiences we encounter along the way help us find strength to persevere through challenges. I try to find strength in my weaknesses. I never thought I would find my voice from the experience I faced, but it has made me so much stronger. I thought I would never survive those surgeries, but I have beaten the odds, and it feels pretty great. When I found my voice, all of my doctors told me that they were so proud of me. Not a lot of people my age have to find their voices because of horrible medical experiences — but it does happen. I survived something I thought I would never overcome. I want to spread the word to people: If you’re living with a health condition, find your voice! You probably won’t regret it.

Getty image by SDI Productions.

Originally published: September 15, 2022
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