28 Signs You Grew Up With an Invisible Illness

If you start experiencing pain, fatigue or other uncomfortable health issues as a child, it can be difficult to communicate this with the adults around you – especially if your symptoms are “invisible” and doctors can’t pinpoint any problems. At this age, you’re still getting used to your ever-changing body, and don’t have many points of reference as to what is “normal.” Although you might feel different than the other kids, it may not always be obvious (to you or those around you) that you are showing early signs of a chronic health condition. It may take years of experiencing strange and constant symptoms before you start questioning whether there’s something more going on.

Even if you haven’t been officially diagnosed, the health struggles you’ve had in adulthood might cause you to look back on your childhood and realize your journey with chronic illness goes back further than you thought. We asked our Mighty community to share some of the signs that they grew up with an invisible illness, which they now recognize in retrospect. Perhaps some of these signs will remind you of moments from your own childhood.

 

Here’s what the community shared with us:

1. “I was always easily exhausted. I never had any interest in sports or extracurricular activities. I just wanted to go home after school and rest, sometimes sleep.”

2. “I had headaches a lot growing up. So bad I would throw up. I remember asking my first grade teacher if I could go get Advil from the clinic (I had my own personal bottle that my mom sent in). She told me no, because it was almost the end of the day. I ended up throwing up all over myself and her carpet.”

3. “I missed a lot of school because of ‘common’ illnesses. So much, in fact, that in fifth grade I won the ‘truancy’ award in the class yearbook.”

4. “When I was 8 I discovered my elbows hyperextend. When I was 9, I figured out I could flip my hands 180 degrees. My shoulders have subluxed for as long as I can remember. My hips have always been hypermobile as well. We never knew these were signs of anything.”

5. “With my athletic nature, doctors and nurses always brushed off my low blood pressure and high heart rate as just being a result of being active. My weight loss or gain, and ‘thinly built body’ all my life was never thought to be an autoimmune disease, but a result of being so active.”

6. “I was always tired and the heat always bothered me to the point I’d pass out while I was playing with friends and they would have to run and get my mom.”

7. “When I was a toddler, I told my mom that ruffles and certain fabrics hurt my skin. She thought I was just being a picky child but it turned out I was born with fibromyalgia and extreme skin sensitivity – allodynia.”

8. “I thought for the longest time I must be a hypochondriac. I seemed to hurt a lot and just have weird symptoms pop up off and on. Looking back now, I think I’ve had fibromyalgia all along and it just worsened with age.”

9. “Always had ear and throat infections growing up and would pick up whatever bug/flu that was going around. [I] was often on antibiotics. [I] developed thyroid disease early on as well that was misdiagnosed for a long time because they don’t suspect it in kids.”

10. “If I had a big school event (school play, etc.) I would sleep for two or three days afterwards because my body couldn’t handle it.”

11. “I always say ‘I’m fine’ or ‘That’s normal’ when I have a low grade fever or have joints cracking or something like that. Having arthritis since I was 4 and chronic migraines as an adult (that I’m still getting used to), I find that certain types of pain I become immune to or just don’t care about. I try not to let [it] bother me.”

12. “I had terrible ‘growing’ pains. I think my parents didn’t take my pain seriously because doctors dismiss pain in the legs and just assume it’s growing pains. I had pain in my joints in high school and extreme fatigue. Parents should take heed if a kid is crying about their legs or joints hurting. It could be autoimmune issues. I had Lyme disease and nobody knew it for years.”

13. “I always got tired faster than the other kids. My mile time was always over 15 minutes, whereas the rest of my class made it in under 13.”

14. “Growing up, things always hurt me more than they hurt other people. I can’t tell you how many times in my life I’ve heard, ‘Aww, that didn’t hurt!’ or ‘That couldn’t have possibly hurt as much as you said!’ Now, nine months after being diagnosed with fibromyalgia, I know my pain was and is quite real.”

 

15. “Getting my period and not being able to walk. Took 10 years to finally get diagnosed with endometriosis and polycystic ovary syndrome (PCOS).”

16. “I couldn’t stand going to the big, new mall. The crowd and large and high ceiling in an enclosed space made me feel really dizzy and confused. I can’t help but wonder if it’s somehow related to early signs of sensory overload secondary to my mitochondrial disease and dysautonomia.”

17. “I was always tired and sore, sprained my ankles easily and had chronic migraines. If I wasn’t taking a sick day from school, I was probably in the nurse’s office.”

18. “I had my first UTI at age 6 and was hospitalized for a week. Since then I had constant UTIs and pain in general. As I got older, nobody saw it as in issue that I would get them, be in constant pain, constantly go to the bathroom and show signs of incontinence. I did my best to hide these embarrassing issues.”

19. “Random bruises! Thanks to EDS [Ehlers-Danlos syndrome] I would get bruises for no reason, and teachers used to think I was abused at home (I wasn’t) because I had so many bruises on my legs.”

20. “I learned to not complain or seek medical attention unless I was seriously injured because nobody ever believed I was sick in my teen years when I first developed what was diagnosed 30 years later as POTS [postural orthostatic tachycardia syndrome].”

21. “For me, it was mostly the isolation. I was so unlike all the other children. I couldn’t breathe. Couldn’t keep up. I’d be wracked with sudden illness, but then would be strangely better. I would fall asleep in class. I was called a hypochondriac constantly by doctors and my family.”

22. “I constantly dislocated and sprained/strained/tore joints. At 36, I got the diagnosis of Ehlers-Danlos syndrome after genetic testing. Doctor said I had probably had it my entire life without knowing.”

23. “Being able to communicate to my mother that I was experiencing a migraine before I could form complete sentences. ‘Head hurts! Head hurts!’”

24. “I was the kid that got overheated, sick and broke out in a rash at the park and had to sit in the shade while everyone else played on the slides (this was in the 1970s). I was diagnosed with lupus in 2015 and have a lot of issues with sun sensitivity.”

25. “I had excess energy and high anxiety for as long as I can remember. I also remember feeling anxiety over road trips or long journeys of any kind because of frequently having to go to the bathroom. Sometimes now when I get headaches and fatigue, I have flashbacks to those feelings as a child while trying to get through school or a family trip. I always thought it was somewhat normal, but now I can identify those symptoms as part of my compromised immune system.”

26. “Looking back, I think about the days in high school where I’d completely zone out and be in another place. I think I had signs of fibro with my fatigue so severe I couldn’t function.”

27. “When I was little I would wake up in the middle of the night screaming because my knees hurt so bad. Quickly I learned that wasn’t OK, so I figured out how to crawl up onto the sink to get to the medicine cabinet and get myself some Tylenol. It wasn’t until I was an adult that I was diagnosed with multiple invisible diseases because I was always told I was ‘too young to feel that way.’”

28. “It’s that moment when you’re told it’s not normal to feel this pain and fatigue. I never knew growing pains and all the ‘party tricks’ I did were a sign of my invisible illness until I was diagnosed.”