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18 Signs You Grew Up With an Undiagnosed Chronic Illness

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When you’re a kid who constantly feels pain or other symptoms, you should be taken seriously. But if your health issues couldn’t be easily diagnosed, you may have experienced adults around you believing one of two things: that you probably just had some “growing pains” or the flu that’s going around, or that you were exaggerating and needed to “toughen up.” It’s an unfortunate reality that when you’re a kid with undiagnosed health issues, you face unique challenges that really only another “undiagnosed” kid would understand — like the terror that is gym class, or what it’s like when you realize actually other people don’t feel pain constantly.

Although you may have felt like the only kid with mysterious aches and pains, you definitely weren’t. We asked our Mighty community to share a “sign” they recognize now that indicated they had an undiagnosed chronic illness. If you can relate to any of the following, know that your pain was valid, and you deserved to have answers about your health challenges.

Here’s what our Mighty community said:

  1. “Constantly being tired. I look back and realize it wasn’t ‘normal’ tiredness. People used to joke that even though I slept a lot I was always tired. Being diagnosed with fibromyalgia I now know why.” — Emily V.
  2. “I’ve had a lot of headaches for my whole life. Sometimes they were excruciating and caused simply by standing up, laughing or coughing. Pediatricians told my mom that it was just ‘tension headaches.’ I was finally diagnosed with Chiari malformation at the age of 42 when I kept losing my balance and having other symptoms.” — Diane S.
  3. “Growing pains, insomnia, migraine, stomachaches… they were sure it was seeking attention or trying to get out of school or any other obligation I had that day.” — Wai-Chee L.
  4. “I was always exhausted. I ate right and got plenty of exercise between sports and dancing, so the was no reason. I was always sick to my stomach and had horrendous periods that kept me home for the whole week. My cramps continued throughout the month. Despite growing up on a farm, I’m allergic to everything on the planet. My parents believed that faith would cure me, so I’m just now getting the help I need at 25.” — Erin H.
  5. “I was told for 19 years that my severe episodes of nausea and vomiting were done on purpose or that it was all in my head… I finally got diagnosed with cyclic vomiting syndrome at age 23. It was 19 years from when symptoms first started. Now, I feel like I have to be ‘armed and ready’ constantly to defend myself and prove that I’m not making myself sick. Prove that my illnesses are real and rare… Now things are showing up on tests and I have proof I was really sick physically.” — Kristina K.
  6. “I had constant stomachaches and motion sickness, and would begin to scream and cry if I had to stay somewhere loud and bright for more than a few minutes. I wasn’t diagnosed with chronic migraine until I was an adult, even though the signs were there.” — Shannon S.
  7. “I thought being in pain all the time was normal and couldn’t understand how the other kids were able to push through it better than me. It was exhausting trying to keep up with everyone, I felt so inadequate and useless. I wish I’d known then that I had Ehlers-Danlos syndrome so I could’ve felt proud of what I was able to achieve instead of frustrated because I was flagging behind my peers.” — Aimie R.
  8. “Nightmarish period pains that steadily got worse instead of better. Each period was worse than the one before it, with more and more symptoms popping up. We found out in my most recent surgery that I had deep infiltrating endometriosis around places like my obturator nerve and my piriformis muscle which is not a usual finding with endometriosis.” — Amelia H.
  9. “Hating sports and gym class (I still do), because I was never athletic enough or had enough interest to do what was expected as well as others.” — Sammy V.
  10. “‘Growing pains.’ I had unbearable pain in my legs almost every night as a kid. I couldn’t sleep at night and would end up in a hot bath with pain meds every night. I would wake up screaming and crying. My parents just thought I was an attention seeker. I was always very fatigued and needed frequent naps to make it through the day. I never grew out of that.” — Hannah S.
  11. “I had migraines as a child. I know this because what I felt then is what I feel now. Because I whined so much, I have grown to believe that children in my life who fuss may not have words to describe their pain, so I do not pressure them to self soothe.” — Tab M.
  12. “When I would try to wake up in the morning I’d always feel sick, dizzy, nauseous, foggy… almost like my body was fighting being awake. I used to actually wish to get a fever or something so that I could actually show something to my parents so that I could stay home and not have to continue to wake up.” — Antonia D.
  13. I would refuse to carry things up the stairs unless I was going up anyway — no special trips. I was always perceived as lazy, but now I know I was practicing energy conservation and battling orthostatic intolerance.” — Sarah A.
  14. “I always seemed to get injured more and easier than my friends. I was even bullied for always being injured. We now know it was untreated joint subluxations and dislocations.” — Lily P.
  15. “I got an F in gym all year, every year, from kindergarten through sixth grade. I couldn’t run, couldn’t catch a ball, couldn’t do a sit up, push up, nothing. I got in so much trouble for being bad at gym. The teacher was always mad at me and I was bullied a lot for it.” — Helen M.
  16. “I was always completely intolerable of chilly and cold weather. While some kids could just whip on a sweater and head outside in the fall, I remember being cold to my core, and not being able to warm myself up without direct body heat or hot packs. My parents, friends, teachers, etc. all thought I used this as an avoidance technique to skip going outside, when in all reality, I wanted more than anything to be out and about with my friends instead of cooped up inside, inexplicably freezing, and alone. These days I rely heavily on my heating pad. I often wonder how I ever got on living my life without it!” — Ashley P.
  17. “I’ve had dysautonomia symptoms since I was a toddler, but was not diagnosed until I was 24. I used to say that my heart hurts, and I always felt like I was going to fall down (I was too young to know the word dizzy at the time). Doctors never took me seriously, so I kept symptoms to myself for a long time, until I started passing out every single day.” — Staci D.
  18. “Extreme pain when standing for long periods of time. As a kids when I was at an amusement park, zoo, or any place that requires a lot of standing, I would feel pain spreading through my joints and back. I just assumed that it was something everyone felt when they walked for long periods of time.” — Cristina M.
Originally published: August 10, 2018
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