26 Things You Do as an Adult When You Grew Up With an Invisible Illness

When you grow up with a chronic illness, you learn early on how to cope with and manage your condition. You might develop certain habits, like always carrying around medication in case of a sudden flare, or planning time to rest between daily activities. Other qualities are learned over time. You might find yourself growing more understanding and empathetic to the struggles others face, or treating yourself and your body with increasing patience, love and respect with every battle you fight.

Many of the habits we develop in our childhood or adolescence may follow us into adulthood, especially when faced with the same health struggles. We asked our Mighty community to share some of the things they do as adults because they grew up with an invisible illness. What feels like second nature nowadays might actually be the result of many years spent struggling, adjusting, and learning how to best navigate life with a chronic illness.

Here’s what the community shared with us:

1. “I recognize stifled or hidden pain in other people. Weight shifted off a leg, an arm used less than normal, tightness in the shoulders, blinking too rapidly, speaking too little or tightly, breath held a little too carefully. It’s a type of body language that isn’t commonly recognized, but I think we see it because we’re fluent in it.”

2. “I no longer make long-term plans because most of those don’t pan out. I’m much more open to going with the flow of life.”

3. “I think it’s pretty common for most people these days to teach their children not to judge people’s worth based on how they look. But I’m also trying to teach my child not to judge how people feel based on how they look.”

4. “I don’t ignore pains that are outside my normal pain. I track and monitor that pain, look for possible causes and triggers and when I approach my specialist/GP I am armed with evidence.”

5. “I still find myself sitting down to brush my teeth, feeling nervous every time I bend over to put something in the oven… I still find myself practicing safety measures ‘just in case’ I have another attack.”

6. “I tell everyone I am OK even when I am not. I keep a smile plastered on my face even when I am in pain. I joke and kid around all the time so everyone thinks I am fine. Very few people ever see the truth.”

7. “Anywhere in public, the first thing I do is note where the bathrooms are.”

8. “Carry a drug store (medication, eye drops, wipes, sanitizer, Band-Aids, gauze stuff that sticks to itself, Biofreeze, sucky candies, Chapstick, Kleenex), a planner for notes and appointments all in my purse.”

9. “I joke about everything. I found out early on that everything is a lot easier when you are laughing, not to mention joking makes heavy subjects a little lighter.”

10. “I’m not afraid to do whatever I need to do to make sure my health is kept a top priority. Whether it be canceling plans, calling doctors over and over to get what I need or using the elevator while ignoring the dirty looks and comments.”

 

11. “I don’t blow up or overreact at people who just don’t know how to respond or react. Patience is a virtue, I’ve discovered, especially the more I discover that people don’t necessarily have ill intentions, they just don’t know how to handle situations.”

12. “I feel the need to justify my actions. As a dancer I am very defensive of my limitations and ‘reasons’ for why I can’t do things.”

13. “[I’ve] always brought my own lunches and snacks, never relied on anywhere I went to have food that was safe for me to eat.”

 

14. “I lie a lot about how I am. I’ve learned that people don’t [always] want to hear you’re not OK, that you’re struggling or in pain or so fatigued you can barely stand. So when people outside my immediate support circle ask me how I am, I say, ‘I’m fine, thanks.’”

15. “I avoid going to hospitals and generally play down/attempt to ignore pain and illness. As someone who grew up with undiagnosed EDS [Ehlers-Danlos syndrome], I was constantly described as highly sensitive and as having a low pain threshold.”

16. “I used to hate how people would talk about me like I wasn’t there as a child. As an adult I correct people: I do not ‘suffer from.’ I ‘do battle!’”

17. “I sometimes accidentally hurt others because my pain tolerance is so much higher than theirs. It doesn’t occur to me that something like squeezing someone’s arm might hurt. On my pain scale, it doesn’t register.”

18. “When I drop things on the floor I automatically try to pick them back up with my feet because I can’t bend to get it.”

19. “I stand up for myself. Doctors are smart and nice and all, but I know my body. If I feel like something is wrong it almost always is.”

20. “I was diagnosed at 11 years old with a chronic illness and I have learned I have nothing to be embarrassed about. I am not ashamed to be me.”

21. “I still sleep on the couch! When I was little my mom would let me sleep on the couch so she could hear me if I needed anything. Now if I don’t feel well I’ll go to the couch.”

22. “I believe people when they tell me they are in pain, or that they know something is wrong with their body, even if they don’t have a diagnosis yet. I think society is too quick to first disbelieve until proven to their satisfaction. Why? What does it hurt to believe someone and be kind? It can hurt a lot to dismiss them and not believe them and can be potentially life-threatening.”

23. “When I’m having a flare from my inflammatory bowel disease (IBD), I always bring a larger purse with extra pants, [underwear] and baby wipes whenever I am out and about. I never know if I can make it to the bathroom in time.”

24. “I always ask, never assume.”

25. “[I] encourage everyone to become an active participant in their healthcare by asking lots of questions and doing their own research.”

26. “I look around to see and help those who may be struggling in less obvious ways. So many people around us are internally [struggling], but we have no idea because they keep a smile on their face. I grew up as one of those kids who was sick and in pain, but no one knew because I pushed myself to appear ‘normal.’ As an adult, I’m more sensitive to watching out for others who are in that same boat. Growing up with an illness gives you a sixth sense of empathy and compassion.”