Being sick sucks.
For most of us, the feeling is temporary. Colds go away, infections clear up, and broken bones heal. But for those living with a chronic health condition, being sick or differently abled replaces what most would call feeling healthy — sometimes forever.
Buzzfeed Life reached out to 21 young adults who live with chronic conditions, ranging from lupus to HIV, to learn more about their everyday life and the challenges they face.
1. When you’re first diagnosed, there’s a period of mourning.
2. Accepting change is often the hardest part.
3. You never really get used to being sick.
“You may learn how to cope, but every surgery, every procedure, every doctor’s appointment is difficult.”
—Gaylyn Henderson, 30, founder of Gutless and Glamorous — Crohn’s disease
4. Not all disabilities are visible.
5. Years of surgeries and treatments can change how you look at yourself.
6. You often have to pick the lesser of two evils between side effects or treatment options.
“Every time I try a new drug, I ask myself this question: Is this side effect worth the ability to walk without a cane? What is more important to me? Being skinny in a wheelchair or being 20 pounds heavier and being able walk freely?
There are certain side effects I won’t deal with. Certain side effects that I draw the line and say, ‘This isn’t worth it.'”
—Stephanie Aleite, 23, blogger — rheumatoid arthritis
7. A physical condition affects you mentally, as well as the other way around.
8. You spend a lot of time waiting.
"Several years ago, before I started dialysis, my aunt was going to donate a kidney to me. She was a perfect blood match, tissue match, and everything was lined up. Twelve hours before the surgery, a test showed she had an aneurysm in one kidney and there was an artery too close to the other kidney to operate. The procedure was canceled.
Shortly after that, I had a distant cousin offer to donate. Same story, perfect match. Again, the last test showed she had a cancerous tumor in one of her kidneys and because of the possibility of the tumor spreading to other parts of her body, it would affect her long-term health with only one kidney. So, 12 hours before surgery, we had to cancel for a second time.
About six months after that, I was on dialysis. I felt an overwhelming sense of bad luck, like nothing I needed to happen would happen. But I continued to stay positive and didn't dwell on the things I couldn't control."
—Nick Charron, 25, gym manager — end stage renal disease, hypertension, asthma
9. And a lot of time taking medications — sometimes for the side effects of your other medications.
“I am currently on 14 different medications. Three of them are for my [ulcerative colitis], one is for [primary sclerosing cholangitis], and the rest are for the side effects of my conditions and medication.”
—Kirsty Gibson, 25, mental health nurse — uIcerative colitis and primary sclerosing cholangitis
10. Sex can be a real challenge.
11. Keeping up with your classmates or colleagues can leave you feeling exhausted.
"When I was in college it was difficult to handle my [multiple sclerosis] and go to school because I had to give myself shots on a regular basis. I eventually had to leave school one weekend a month to get an infusion of my meds."
—Christopher Kenny, 25, high school math teacher — relapse remitting multiple sclerosis
12. But a good support system can get you through almost anything.
"I was bedridden for over a year after I got [myasthenia gravis]. It was scary — the future was uncertain and I feared being paralyzed for life. Sometimes, friends would come over and bring Red Robin burgers (my favorite), watch my favorite comedians with me, or pray for me.
The biggest piece of advice I would give to people who love friends with chronic illness is to not stop visiting them."
—Jessica Gimeno, 31, health activist, writer, speaker, and high school debate coach — bipolar 2, polycystic ovarian syndrome, myasthenia gravis, asthma, psoriasis
13. Especially when it’s your family.
14. It’s important to celebrate all of your victories, even if they seem small.
"During the recovery process I find things to be proud of myself for a lot — specifically, hiking to the top of the Highlands Bowl again for the first time in three years this year! Or being able to finish [reading] a book."
—Emily Merchant, 28, server and bartender — stroke
15. It’s easy to blame yourself, even though it’s not your fault.
16. Your normal may not make sense to others.
"For someone who is born blind, that's your normal. You don't really have anything to compare it to. I never viewed blindness as this tragic thing. This is just my normal.
But gradually losing my hearing really made me more empathetic to [other disabled] people. As a blind person, your ears are your eyes."
—Christopher Kchao, 25, disability services assistive technology specialist — blind with progressive hearing loss
17. You can try to hide an illness, but that doesn’t mean it goes away.
18. Keeping up with everyday tasks can be difficult.
“Having a chronic illness means that even though you can barely get off the bathroom floor in the morning, you have to. You have to pay bills, you have to go to classes, you have to maintain friendships, you have to keep on going with life.
You’re sick every day, and most people don’t know it. People therefore expect you to perform just like everyone else in life, and it’s scary and exhausting.”
—Kristin Harris, 26, freelance designer — ulcerative colitis
19. No matter how strong you are, ignorant comments still hurt.
20. Illness can dash your dream of starting a family of your own.
“My chronic illnesses have taken my ability to work in the career that I loved and worked incredibly hard for, it’s taken my ability to have children, it’s taken my hair, my looks, [and] my energy. It’s ruined relationships, and almost caused the demise of my marriage.
I don’t work, I don’t have kids, and I’m sitting back watching all my friends become established in their careers and start families.
It’s disheartening. I know deep down it’s not true, but on bad days I feel like less of a woman. Like all of the plans I made and the things I worked incredibly hard for were taken away for me. And I’m not the ‘woe is me’ type, but it’s difficult to not think negatively on the bad days.”
—MarlaJan DeFusco, 33, pediatric cardiac ICU nurse (currently on disability), patient advocate and blogger — tetralogy of fallot, systemic lupus erythematosus (SLE), immune thrombocytopenia
purpura (ITP), acquired angioedema, Sjogren’s syndrome, Behcet’s disease, Raynaud’s disease, interstitial lung disease, cervical cancer, atypical lobular hyperplasia, double mastectomy after finding a pre-cancerous lump
21. But, despite all of the challenges, you still manage to come out a stronger, better person.
“In a way, I'm glad that my condition began at such a young age. I wouldn't be the strong, fearless, self-advocating woman that I am today. I wouldn't be so confident that I can take on any challenge.”
—Sarah Rose Eamon, 23, multiple part-time retail, tutoring, and social media jobs — TMJ disorder, chronic migraines, trigeminal neuralgia