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16 People Reveal What It's Like Having a Chronic Illness in Your 20s

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Being in your 20s is usually thought of as a time to go out, see the world, spend time with friends and get started on your career. But what if you live with a chronic health condition? The things many 20-somethings do without a second thought may not be easy to enjoy with painful symptoms, fatigue and constant doctor’s appointments.

Since you’re so young, others may not understand why you can’t “just push through” and live like your peers. So we asked our Mighty community to share the truth about what it’s like to have an illness in your 20s. Their answers make it clear that even if you’re young and “look healthy,” you could still be dealing with challenges — and the strength you have in managing your health should not be underestimated.

Here’s what our community told us:

1. “It’s canceling plans at the last second and being embarrassed when asked if it’s because of your illness. It’s getting married and wondering if you should have pushed your spouse away rather than have them sign up for a life of being a caregiver whenever you have a flare-up. It’s having to go to work in pain and exhausted because if you call in sick, you’re a ‘lazy millennial.’”

2. “Your 20s are your time to learn, explore, make mistakes, and find your passion. But, for those of us in our 20s with a chronic illness, we can have a different perspective. We may live in minutes and nows, not years and the future. With each breath I take, I don’t act in haste. I dissect every possibility and action based on how it will affect my health.”

3. “It’s like walking uphill while your peers walk down. Many of my peers are dating and getting married while I’m searching for my next doctor. Friday night for my peers is often spent out with people, dancing and maybe drinking while I’m sleeping and enjoying the comfort of my fireplace. Some peers are having kids while I struggle to get myself fed and dressed each day. While some peers are traveling the world and graduating college, I’m struggling to get to the grocery store. I feel old, like I skipped all they’re going through and experiencing.”

4. “At 20 years old, you are just beginning your life. People constantly tell you you are too young to be in pain… You are still considered too young to really know what pain is, but you’re old enough to know you are in pain.”

5. “I’m 22 and a full-time college student. It’s a struggle, especially with the fatigue. I already have my Associate’s and almost my Bachelor’s. It’s like living in a world where no one understands you except for the ones who are going through it themselves.”

6. “Metaphorically, it’s like being in a flock of birds, but only your wings are broken. Everyone else can fly, but you cannot. It’s soul-shattering to watch your peers live the life you wanted to have. You feel left behind while they graduate from school and move on with their lives while you’re stuck in a never-ending cycle of pain, sickness, isolation, and confusion.”

7. “I’m 29. I had a doctor tell me I have to push through because I’m going to live another 60 years. It’s a bit depressing sometimes, and I sometimes feel like my life is over before it really started.”

8.It’s terrifying because health isn’t known to improve with age, so every ‘just wait until you get older’ is a reminder that this may be the healthiest you will ever be from here on out. Your healthiest ‘best years’ of your life will likely be spent in hospitals and medical appointments with more sleepless, painful nights than good ones.”

9. “No longer in my 20s, but I was diagnosed at 25, and it was hard to accept that I was never going to be the same. But eventually I came to terms with my new destiny. It took time, tears, and a lot of aggravation, but I got to a place where I was able to look at the positive that came from it.”

10.It’s having people say things like, ‘Oh my grandma had that.’ It’s being the youngest one in the waiting room every single time.”

11.It’s having to act like a much older person when you might occasionally want to act your age. It’s worrying about your future, your career, your happiness without having the advantage of more time pre-illness. It’s knowing your whole life will include these symptoms and trying to reconcile that with the life you dreamed about. Mostly it’s about making choices, to put your health first and too often your happiness second. But it also makes you more introspective, aware of want you need, and I think more compassionate than many people are in their 20s.”

12. “It can be extremely isolating having a chronic illness at a young age. In your 20s you should be going out and having fun, not juggling fatigue, doctors appointments and pain management. But it has also shown me who I can rely on, who understands and who my true friends are.”

13. “As someone who went from being diagnosed with inflammatory bowel disease (IBD) at age 20 to now being 29 and turning 30 in a couple weeks, it is has become very different for me. From ages 20 to 25 I was embarrassed and found it stressful to have to tell someone I was newly dating what the illness was. I found it hard to always have to explain to people why I wasn’t getting drunk with everyone else. Today, I could care less about telling someone about the disease and how it affects me. I still have many struggles, but I now don’t hide them.”

14. “You lose a lot, but you gain a lot, too. I’m in a completely different place than all of my peers. But I’m proud of the journey I’ve been through. Chronic illness doesn’t have to take away your 20s. It’s just a different path, and that’s OK.”

15. “Misunderstood. You don’t know what a day in my life is like, and you shouldn’t assume, ‘Just wait until you’re my age!’ My body is already behaving like it’s your age. At least [people expect] you to be too tired for activities. Everyone assumes I don’t want to do them or I’m just lazy.”

16. “Having a chronic illness at 22 is trying to find out how to be an adult and how to live with your illnesses and not under them. It’s finding out who is there on the hardest of days and not just the good ones. It’s a balance of ‘these are supposed to be the fun years’ and also being smart enough to take care of yourself.”

Originally published: March 22, 2017
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