19 of the Hardest Parts of Living With a Chronic Illness
Though your friends and family may know you have a chronic illness, they may not realize how much it affects each and every aspect of your life. You don’t get a check-up once a year and then forget about it — having chronic health conditions means many aspects of your life, from your friendships to your job to your sense of self, can become more challenging to manage.
Because life with chronic illness tends to also be chronically misunderstood, we asked our Mighty community to reveal the hardest parts of their illness. Share so your loved ones can begin to get a better sense of the reality of your life — that chronic disease don’t only affect your physical health, but your emotional health as well, and it’s important for you to have support for all these challenges.
We know life with chronic illness can be difficult and debilitating at times, so we want to leave you with advice and guidance from our community for coping on those tough days. Check out some resources at the end of this post.
Here’s what our community told us:
1. “The hardest part about living with a chronic illness is missing me — the me who could be rambunctious with my family. I miss that person so much.”
2. “Trying to explain what it feels like to someone who doesn’t have a chronic illness. That I’m not ‘just tired’ but fatigued; that I can’t party like I used to; that I can’t go camping because I wouldn’t be able to sleep on the ground. They just don’t get it most of the time.”
3. “Not knowing what a life without being sick is like. I started having health issues before I was in high school so I never got to experience a regular high school, college or adult life without illness.”
4. “Knowing how much I’m missing out on with my kids. They’re getting older and more self-sufficient, but I’d give anything to just take them to the amusement park or shopping all day without worrying about having the energy to drive home.”
5. “Having to turn down things you’d actually really love to do, especially in a situation where someone would be depending on you. For me, it’s tough — I don’t want to let anyone down, and my health is so unpredictable that I feel like I can’t make any kind of commitment because in all likelihood I’ll wind up sick and unable to fulfill my obligations.”
6. “The hardest part of living with a chronic illness is trying to function like a ‘typical’ person when everything is so much harder now. On the inside, it takes all our strength to get through each day, and yet, from from the outside we are often viewed as being weak, lazy or attention-seeking.”
7. “The hardest part of living with a chronic illness is the constant fear of the unknown. No matter how well you may feel for a little while, you can become completely unable to do anything in a matter of seconds. It’s so debilitating physically and mentally.”
8. “Dealing with others’ opinions and judgments is very hard. Also, since society ties so much of a person’s worth on what they do in life, it’s easy to beat yourself up when you can’t keep the pace of the rat race. Managing a chronic illness really puts what matters in life into perspective.”
9. “I think the hardest part of living with a chronic illness is the isolation. This manifests itself in several ways. Friends may be supportive at first, but after a while they gradually pull away. Maybe they are uncomfortable being around someone so sick or in so much pain. Maybe they feel powerless to help, or maybe your pain and illness is a reminder to them that they are human and frail as well, and it could happen to them… There are probably a million different reasons, but being the friend of someone in constant pain is not for the faint of heart.”
10. “I’m limited in what plans I can make for the future. I’ve already had to make changes to my career plans. Now as I move forward with my career, I wonder daily how long I’ll be able to keep up and how safe I should play out with regards to what jobs I take.”
11. “Medication can take three to six months to start working… but if you have a reaction and have to stop taking it, despite an apparently really long half-life, it can take just one to two weeks [for pain to start] again. Sometimes when I sit down and let myself think about it for a second I feel kind of heartbroken for myself for not remembering what it is like to have a pain-free day.”
12. “Unpredictability of it all. Will I make it through a work week? Not this week. Will I be able to do fun stuff on the weekend with the family? Will April be a better month? Will I be able to drive, walk, sit, function today?”
13. “The burden (financial and emotional) on my family. Not being able to give them the security of what’s going to happen next week… or even tomorrow. It takes a toll on all of us.”
14. “The moments when you realize or remember that ‘chronic’ means for the rest of your life. It’s easy to tackle one day at a time, but forever is a lot more difficult to think about.”
15. “The hardest part is lack of sleep due to pain… You wake up exhausted.”
16. “[Explaining] to my small children why Mommy can’t play catch with them, or run with them, or why Mommy is always tired, and why Mommy cries because she hurts so bad.”
17. “Not being well enough to do normal work and not being sick enough to be disabled. Trying to freelance from home and having so many employers tell you they want to keep the work in office (even though it’s unnecessary), it’s very disheartening.”
18. “Having a really rare disease and not having people around me I can relate to.”
19. “Being judged by how I look instead of what’s really wrong. I’m glad you got to see me on a good day, but you’ve never seen what I’ve gone through to get here.”
Check out these resources from our community on coping with the challenges of chronic illness:
15 Things I Do to Keep Smiling on Bad Days of Chronic Illness
Coping With the Coexistence of Depression and Chronic Illness
16 Ways to Get Through Days When It Feels Like Your Illness Is ‘Winning’
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
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