21 Photos That Show What It's Like to Be Young and Chronically Ill
Chronic illness doesn’t care how old you are. It can strike at any age and can be just as severe at 25 as 85. And yet, so many people (including some doctors!) seem to not understand that it’s still possible for you to be young and live with a chronic illness. Even if you don’t “look sick,” you could still be taking several medications, enduring frequent doctors’ visits and hospitalizations and be in a lot of pain.
We wanted to raise awareness of how many people out there are actually young and chronically ill and reveal what it’s like to live a “young and chronically ill” life. We asked anyone in our Mighty community who’s been told they’re “too young to be chronically ill” to share a photo that represents their life. It’s time for people to understand that age and appearance don’t mean you can’t be affected by illness.
Here’s what our community shared with us:
1. “Here I am, taking a nap during my wedding reception at age 28 because I had a migraine. People say that age is just a number when it comes to romance… Why can’t they feel the same when it comes to young people with chronic illness?” — Ami C.
2. “My blood pressure got too low and I had to stop and sit in the middle of the store. I had my service dog apply deep pressure therapy to help with the blood that had begun to pool in my legs.” — Shelby K.
3. “When I was diagnosed with juvenile dermatomyositis I experienced muscle aches, fatigue and of course moon face (from the prednisone). When I would complain from how the stress affected my flare-ups or the functionality of my body that day, people would make comments that I’m too young to feel that type of pain. Also how I’m at an age where I should still feel youthful even with this type of diagnosis. I didn’t feel youthful, I didn’t feel that energy and because of my diagnosis I will never feel 100 percent again.” — Gretchen Q.
4. “Constant struggle with fatigue, pain and much more. I hear that comment all the time along with disapproving looks from older people. Like they don’t believe me.” — Sindy L.
5. “Even though I am extremely fortunate to be living an active and ‘healthy’ life, it can be easy for people to forget that a congenital heart defect (CHD) requires lifelong, specialized care. To look at me, it’s not obvious that I’ve had two open heart surgeries, four cardiac catheterizations, and countless other tests and procedures along the way. Each year, my annual checkup with my adult congenital heart disease cardiologist is like a journey into the unknown, as complications or new issues with CHD can arise even when a patient is feeling asymptomatic.” — Ken W.
6. “It means a lot of times my young children have to be involved with a lot of my appointments, ER trips and bad days. While it makes me feel guilty at times, it’s also comforting to see how loving and understanding they are (sometimes more so than the people who say I’m ‘too young to be chronically ill!’).” — Bonnie P.
7. “This was one of the last years I was able to play softball before my medical issues took it away. I was in a boot when I didn’t play and my body gave out often. As soon as the game ended, my teammate would carry me on her back.” — Sarah B.
8. “Diagnosed with multiple sclerosis at 17. I am 31 now. It’s tough, but I am so grateful to The Mighty for raising awareness!” — Aaron V.
9. “Chronic fatigue. #lupussux.” — Saira H.
10. “Trying to put on makeup and function despite not feeling well and recovering from having my head and neck fused. I have Ehlers-Danlos syndrome and Chiari malformation. I am told regularly that I’m too young for this joint pain.” — Megan M.
11. “The first time I ever had a trigeminal neuralgia attack, I was at the Detroit Zoo, age 3.” — Miranda K.
12. “Being chronically ill means that you have a bag packed with everything you’d need to make a nice stay out of your hospitalization: toiletries, cute PJs, journals and fun colored pens, books to read, puzzle books, iPod and headphones, yummy smelling lotion, favorite piece of jewelry to keep you feeling fabulous and makeup because we all know we feel better when we don’t feel like a troll. It’s how I hospital!” — Gwendolyn C.
13. “My attempt at getting outside air. I have Crohn’s disease, fibromyalgia and I take an immunosuppresant. My immune system is compromised, so I’ve been stuck inside dealing with vertigo from a sinus infection. I’ve had up to four sinus infections a year due to being immune compromised.” — Elizabeth J.
14. “Fibromyalgia and chronic pain means quality time with family almost always occurs on a comfortable couch.” — Flores A.
15. “I am 31 and every time I see a new doctor I am told I am too young to have this many issues. It is beyond frustrating. Here is me waking up from my annual endoscopy which I have to get because my immune system attacks my stomach lining.” — Kayleigh B.
16. “I was 24 in this picture. I’ve never been someone to nap, but sometimes you just can’t make it 10 hours into the day.” — Casey M.
17. “I’ve had ankylosing spondylitis since I was 17, Crohn’s since I was 22, and neither respond to any medications currently available or I am severely allergic to them. I had to leave work and apply for disability at 27 (still waiting!), and I had a colectomy and ileostomy done this past December; I turned 30 in January. I now point out that the average age of onset for AS is in fact 17, and Crohn’s often presents in the teens and 20s, but either illness and many more can happen to literally anyone at any time. I also point out the CDC estimates approximately one-fourth of Americans have or will have a disability by their 30s, sooo… shove it.” — Samantha A.
18. “I’m always accompanied by my service dog, from the mundane grocery shopping to doctors and hospital visits to big trips she comes with to keep me safe and healthy. I’m young, I don’t look sick, but I rely on her daily.” — Bay H.
19. “I have my Apple Watch set up to notify me if my heart rate gets above 120 while not doing anything. This is just moving around, working on homework in my bed. Gotta love postural orthostatic tachycardia syndrome (POTS).” — Carlow D.
20. “Having to use an electric cart in stores at 21. No, I’m not a kid using it for the fun of it. Yes, I can stand to get things off shelves if I have to.” — Bernadette J.
21. “‘Sorry puppy, not enough energy to take you for a walk again today. Maybe tomorrow.’” — Dion M.