When My Health Problems Were Overlooked Because 'Sometimes Things Just Hurt'
For the first 19 years of my life, I complained frequently about my constant joint pain, my lightheadedness, the daily heartburn that made me want to curl up in a ball until it let up, if it even did that day. I was told by everyone in my life, including my family doctor, to toughen up and that “sometimes things just hurt.” I couldn’t understand it. If this was life, if this pain is normal, how is everyone else functioning so well and not complaining? Why was I so much weaker than everyone else? These questions inevitably led to much darker ones like, if this is what life is, am I really cut out for another 50 plus years of this?
It wasn’t until I was 18 and my gallbladder stopped working and became so swollen it could be felt under my skin that my doctor finally believed something was happening and gave me the name of a surgeon. Rather soon after meeting he removed my toxic gallbladder, but months later I was still sick. I was told I had had a surgery, recovery can take a while and, of course, “sometimes things just hurt.”
At 19 years old, I couldn’t stand the constant pain and discomfort any longer. If this truly was life, I didn’t want it anymore. If this was life and everyone around me was dealing with their pain and discomfort just fine, I simply wasn’t strong enough and that was going to have to be that. Out of sheer desperation, one year after surgery, I called the surgeon. He was the first doctor to believe me, the first one to take action, the first one who really seemed to hear me and not simply remind me “sometimes things just hurt.”
He listened to me again, and said although it had been a full year, because I was one of his youngest patients he could recall my case immediately and that all the pain I was experiencing (yes, he actually believed me when I said I was in an abnormal amount of pain!) wasn’t from the gallbladder surgery. I was directed to a gastroenterologist who did scopes and took biopsies to discover I had eosinophilic esophagitis.
After finding an allergist that specializes in EoE, he helped find me a team of doctors that also discovered I not only had that, but also Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome and a second type of dysautonomia. For the first time in my life I had answers, I had been heard.
Sure, I was still in pain, but I was on a path to getting a better grip on it. I was validated. No longer did the people in my life tell me pain was just another part of life. I went from being told to be tougher to all of a sudden being admired for my strength and endurance. It was night and day after being diagnosed and having proof that what was happening to my body was real, that my pain wasn’t all in my head and not standard.
A question I was asked a lot that I’ve found is hard for people without invisible illness to understand is, “If you knew something was wrong, why didn’t you push to find out what?” and my answer has never changed. I didn’t know something was wrong with me or different from anyone else. Up until that point, I based everything off my only reference point: “sometimes things just hurt.” Everyone only knows what it is like to live in their own bodies, and no one else’s. After being told my entire life, “everyone gets heartburn sometimes,” “you’re probably still growing, everyone gets joint pain while they grow,” “if I jump up too fast sometimes I get a little head rush too” and too many others I won’t list in the interest of time, I didn’t know better.
It’s understandable the adults in my life missed all the warning signs. If a child doesn’t want to eat carrots and claim it is because carrots give them heartburn, it’s reasonable to assume the child simply doesn’t want to eat their vegetables. I know it’s the rare case when that “heartburn” is actually mild anaphylactic shock the child simply doesn’t understand or even have the vocabulary to articulate. I was (and still am) very loved, but the red flags were swept under the rug, and I grew up feeling weak and less than everyone else around me because not a single person, including myself, realized my pain wasn’t normal. We will never know what it is like to live in someone else’s body, so we should all be kind and listen to each other a little more, but we should also be the first person to listen to and believe in ourselves if something doesn’t feel quite right. That was something I didn’t realize until after I was diagnosed.
Knowing what I know now I wish I hadn’t accepted “sometimes things just hurt” and based my perception of myself off that one sentence. For five years I have lived with my chronic illnesses and known their names, known they are real and just not made up in my head. I feel strong knowing every day I will wake up and feel pain and discomfort, but will get out of bed and do my very best with what I have to work with. I have been doing it all my life, but now I do it with pride instead of shame.
What changed my entire mentality wasn’t so much the new names I had to go with what I was experiencing and the validation I felt from them, but the fact I now feel free. The constant need to compare myself to how everyone else is managing life has nearly vanished. Sure, on my worst days I look at people with envy. People that are out there playing sports, eating whatever they want, going shopping or even standing up more than five minutes without fainting. Honestly, sometimes that makes me both sad and jealous. But it no longer makes me feel weak or somehow less than them.
It is true that “sometimes things just hurt,” but I have learned to be patient with myself and my body. Just because everyone experiences pain, discomfort and has their own struggles, they are all unique to the person and all we can do is keep doing the best we can with whatever pain or situation we are given. All those years I spent thinking my pain made me weak, when in reality, it was making me the mentally strong person I am today. So on the bad days where I am stuck on the couch or in bed, I am a lot more kind to myself and can find pride in the fact better days will come and I will keep moving forward because I am strong enough for this life.
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