The Mighty Logo

21 Challenges of Being Chronically Ill That Will Make You Say 'Me, Too'

The most helpful emails in health
Browse our free newsletters

The exhaustion of grocery shopping. The uncertainty of making plans. The comfort in meeting someone else with your diagnosis. If you’ve never experienced health challenges, these situations may not resonate with you — but those who live with a chronic illness may be able to think of an exact time they felt the same way.

There’s no one besides another chronically ill person who really “gets” what daily life is like when you have chronic health challenges, so we asked our Mighty community to share experiences that will have other members of the community saying, “Me, too.” The next time you encounter one of these challenges, remember that you’re not alone — there’s a whole community fighting these battles alongside you.

Here’s what the community told us:

1. “I’m not able to make plans, even if it’s a few hours away. I’ve had days of feeling great in the morning and being stuck in bed later that day. Each concert ticket is a risk, vacations are a risk, and you don’t want to make plans with friends because you feel bad when you can’t keep them.”

2. “I felt guilty because I was able to do something this morning, or yesterday, or last week, so surely I’m well enough to do it now, if I really wanted to. ‘Mind over matter’ comes with consequences. Pushing through the pain and fatigue only results in more pain and fatigue!”

3. “I’ll be exhausted even if I have done nothing but sleep or sit on the couch. I have to talk myself through taking a shower because it is so exhausting.”

4. “I’m in college and trying to find the balance between caring for my health and doing well in school is hard most of the time. It’s a constant struggle between being a ‘good student’ and not sending myself into a flare. Sometimes I feel like I can’t keep up with everyone else in my degree program; it’s like trying to run a marathon with weights strapped to your feet.”

5. “It takes so much strength and courage to leave the house. And when we do we put on a brave smile and pretend everything is OK.”

6. “I’m not able to enjoy intimate time with my significant other. I’m too exhausted, hurt, or I just physically aren’t able to.”

7. “Brain fog so bad that I can’t figure out how I got from point A to point B when driving somewhere because I have no recollection. Or brain fog causes me to do things like putting my makeup away… in the refrigerator.”

8. “I just slept until 1 in the afternoon and now we have to reschedule tuxedo shopping for my groom. Things like this happen so often. I can’t sleep or stay asleep and then end up sleeping during hours that businesses are run so I can’t get anything done.”

9. “Exhausting doctor visits have no end because… chronic! Closely related is the cringe quality of people saying, “You will feel better!”

10. “Finding a way of sitting comfortably and alleviating pain slightly, even if it’s for a few moments, is like all our Christmases have come at once. People assume we are ill because we ‘don’t get enough rest,’ yet finding comfort while sitting or standing is usually always painful.”

11. “I’m not able to just eat whatever I want. I constantly have to think about the consequences of eating something and whether or not I wanna deal with them, whereas my fiancé can just wolf down a cheeseburger or donut and not have to think twice about it.”

12. “There can be a sudden onset of symptoms. One day you can be just fine and feel like finally your life is normal, the next all you want to do is stay in bed all day and sleep.”

13. “When going to Costco is exciting because you haven’t left the house all week and you’ve been looking forward to it the way a ‘normal’ person feels excited about a concert or a trip to the beach.”

14. “When you have a new pain somewhere, like my index finger on each hand, or my hip all of a sudden hurting, or my neck throbbing and burning, and you are not sure if it’s related to fibro or osteoarthrtis, or something else is wrong. It can also be hard to tell which illness is flaring up sometimes or if it’s a combo of everything.”

15. “Doctors! We understand doctors, the good, the bad, and the ugly, like no one else… Sometimes it helps, sometimes we’re left way worse than when we started. Often we know more about our conditions, medications, and how they affect us than doctors will ever give us credit for. Then when you find those medical professionals who really hear you… that’s the best feeling.”

16. “The anxiety that comes with calling off work! I worked as a mental health therapist and sometimes worked up to 60 hours a week, so when I would need to call off work for my chronic illness I felt it was almost impossible to relax because of the intense anxiety I felt calling off.”

17. “I get excited finding someone else in real life who has the same illness as me so they ‘get it!’ You don’t have to go into detail talking about common situations.”

18. “The moment I realized I was no longer able to do things I used to do. Having to adjust to a ‘new normal’ which is anything but.”

19. “When arriving at the pharmacy, they greet me by name. Same goes for when I call the pharmacy, they recognize my voice and greet me as if I am family.”

20.Buying a whole new wardrobe because I now need clothes that are easier to put on and comfortable to wear. Planning what to wear in the morning takes much longer because I now have to consider my pain level and body stiffness. I have ulcerative colitis, so I also have to think about the potential for my belly to bloat.”

21. “Small accomplishments can be a huge thing on a bad pain day! E.g. getting dressed, having a shower, making something to eat, etc.”

Originally published: March 14, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home