My Version of Normal is Very Unique
My medical journey began as I first entered the world, therefore making pain a normal component of my life. Immediately following birth my hips were x-rayed due to abnormal flexibility, and it didn’t take long to discover I was allergic to breast milk. As I began to communicate, I continuously fussed for my diaper to be tighter around my stomach. Although I wasn’t at an age to understand much, my parents recognized that since I had digestive issues, the extra pressure around my stomach provided comfort. By the time I was able to walk, I refused and insisted on being carried, practically at all times. In order to get my parents to carry me, even when they were busy or tired, I would sit on the ground, in public, cry, and scream “MY LEGS ARE BROKEN!!!” I don’t remember doing this, but this was so smart and funny of me to do. I was a shy kid, who never acted out like this, but I was in pain and I didn’t want to walk. Sorry Mom and Dad, but thanks for carrying me around all those years.
By the time I was in elementary school, I had an entire list of medical complications and symptoms. I had allergic reactions daily, hives, rashes, sharp pains, chronic stomach pain, heat intolerance, digestive issues, kidney infections, headaches, ringing in my ears, vision changes, joint pain, nausea, injuries that never resolved, and more. When I was in second grade, I was diagnosed with severe asthma and spent the next couple of years in and out of the hospital trying to get it under control. Following this diagnosis, I had difficulty breathing, low oxygen levels, a chronic cough, chest pain, and had difficulty running around with my peers.
Every day I was in pain, but I didn’t pity myself or wonder why I felt this way. It was normal in my world; I didn’t think twice about it. I was so focused on functioning through the pain that I didn’t realize it was unusual, I assumed everyone lived this way. I never compared my life to a pain-free one, because I have never gone a second without feeling pain. As odd as it sounds, I am glad that if I have to be constantly in pain, that I don’t know how good it feels to live without it. I am glad that it took me until fourth or fifth grade to learn that what I was experiencing wasn’t “normal” and rather my reality was something that very few understand.
I Don’t Want Attention, I Want Relief: People’s Disregard
As my symptoms progressed, my friends, teachers, and coaches’ dismissal came as a surprise to me. I didn’t understand why others failed to believe what I was experiencing. I recognized that they could have thought I was lying for attention, but I didn’t understand why anyone would ever lie about this, especially when most don’t believe it in the first place. People refused to believe any symptoms that weren’t visibly apparent, yet also disregarded the visible aspects. Even after a test validated that something was off and causing legitimate concern, people rarely acknowledged the reality. People were so convinced that I was fine and that it was all in my head, there was nothing that I could say or do to change that. How is a little kid supposed to convince others that they are serious about their pain and not making it up? I didn’t find an answer for it then, and I still don’t have one now. People often don’t believe adults about their pain, so being a kid with chronic pain holds an even greater disadvantage. Although people’s reactions and dismissal hurt and was something beyond what I could understand, I was forced to persevere and adapt. I was going to be in pain regardless of whether others believed me or not, and I was more focused on dealing with the pain than trying to convince everyone to listen.
The emotional pain of being disregarded served as a life lesson to never dismiss others. I grew from how others treated me and learned to treat others in a supportive and kind way because you never truly know what someone is going through. I realize now that growing up this way taught me lessons in elementary school that others around me learn in adulthood. Chronic pain forces you to grow in certain areas of life, using a different perspective, outlook, and maturity than most adults do, simply in order to survive. You must develop skills and gain strength in order to persevere through life’s obstacles and all of the pain. Yet people’s ignorance and reactions hurt me then and occasionally still does now.
As others failed to understand what was going on in my body, I rarely expressed discomfort. I pushed through severe symptoms, injuries, and even broken bones in order to avoid the embarrassment of others’ responses. I learned that even if someone believes me, believing and understanding are vastly different concepts. In order to avoid the negative feelings associated with people’s ignorance, I learned to mask my pain. If I could hide my pain, then there wasn’t anything that people could disbelieve. But it’s not purely about others, it’s also the fact that with chronic pain, you constantly have to adapt. You must adapt to constantly feeling new pains, more severe pain, and new symptoms. You have to adapt to your baseline pain continually increasing, even when you think that you can’t withstand any more. You have to gain new strength in order to reach a point where the previous unbearable pain is now your standard level. As you learn to function on a higher degree of pain, eventually you can do so while smiling. You adapt so you’re able to interact and portray yourself in a way that no one would ever think you were in pain. To me, this isn’t about hiding my reality from others; it’s also about persevering and gaining a sense of control. Yes, I am in pain every second of every day, but I decided at a young age that I wasn’t going to let pain hold me back from experiencing life. Unfortunately, in order to not let it hold you back, you have to try your best to pretend that it isn’t there, even if that means that no one truly understands what you are going through.
Heal Me, Don’t Hurt Me: Doctors’ Skepticism
I preserved through various people in my life not understanding what I was experiencing, but what stung differently was the medical system’s disregard. The medical system should be a place where every individual can express their pain, be believed, and receive assistance in finding relief. Unfortunately, this was never my experience as I quickly learned that doctors can be the most skeptical of all. Their dismissal and skepticism made it clear that, for some of them, the only thing that came to their mind was hypochondriac.
It frustrated me, as it would frustrate anyone. I was tired of feeling sick every day, but how was I ever supposed to feel better when the people that are supposed to help me, wouldn’t even believe me? It was disappointment after disappointment for over twenty years, and primarily continues to be that way today. If it doesn’t show up on a test, you are healthy in the doctor’s eyes. But it goes beyond this. Even when something shows up on a test, but the doctors are unable to determine the cause, you are still perceived as healthy, an excuse is made, it is ignored, or you are sent to start all over with a new doctor.
Constantly going from doctor to doctor and receiving so much skepticism made me ashamed to feel this way and embarrassed to be honest with how bad it truly was. I wondered if maybe I was being sensitive, or perhaps it was all in my head - but these worries never lasted because I knew the reality of the situation. There was so much going on, so many symptoms, yet most seemed to not to care or notice. It wasn’t until the end of high school, when I had debilitating symptoms, that a few doctors took me seriously. Unfortunately, even with the rare occurrence that a doctor believed me and suspected something larger to be going on, they were unable to find the cause or offer much advice. At least two of these doctors told me that I might never find the cause and one suggested to stop looking and learn to make the best of it. I experienced constant pain for over 20 years before any doctor suspected or mentioned EDS. Right before I finally found doctors that listened, I went through four years of the worst medical care that I have ever received. From going to specialist to specialist, there were various times that I left appointments in tears of disappointment and frustration as they wouldn’t listen, and I was left suffering. However, when I was a child living in pain every day, no one thought much of it. No one was concerned that something larger was happening, no one but my mom and me. It is demoralizing and upsetting to be told that nothing is wrong when you know there is, receive no assistance, feel unheard, and be left trapped in your pain. It is isolating to accept the harsh reality that even at such a young age, you are able to understand things that grown adults can’t.
Depression
By the time I was in fifth grade, I felt sad and anxious every day but couldn’t think of any reason why. It got to the point where I was in tears often, struggled emotionally to make it through the day, and my emotional pain felt more unbearable than the physical pain.
After explaining what I was feeling to my pediatrician, he responded, “I’m surprised it took you this long to feel this way, considering your medical history.” I was taken back by his reaction, which solidified my realization that what I had medically was not typical. I didn’t know what depression or anxiety was prior to this appointment, and I sure didn’t know anyone else my age experiencing this. Yet this seemed so expected to him and something he was surprised took so long to occur. He explained how impactful constantly feeling sick is, along with how influential people’s dismissal can be. I didn’t understand, I didn’t consciously feel sad about my pain or experiences, for the most part I thought it was typical. Now looking back, I recognize the association between pain and sadness; anytime my physical pain worsened, so did the emotional pain.
Also influential to my negative emotions was how society and those around me responded to my medical circumstances. When I was young and thought everyone lived this way, I didn’t struggle with negative emotions or feel misunderstood. It was only when I began noticing the difference between myself and others and I realized how difficult it is for others to believe and empathize with what I was experiencing. This makes sense as disability is a social construction that first emerges in school, but it also demonstrates how impactful and damaging society’s response to illness is.
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