21 Things Only People Living With A Health Problem Know

Being sick is hard. But it's not impossible.

Alice Mongkongllite / BuzzFeed

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.

Courtesy of Jacklyn McNeil

"I was really tired of going through the grief cycle of feeling good and feeling terrible, feeling in pain, waiting for the ball to drop, and wishing for my old life. I decided that I was done mourning what once was and was ready to face what is, whatever that may be, good days and bad days.

I held a funeral for my old self (privately) and wrote letters about all the memories of things I used to love doing that I can no longer do. I sealed up the letter, and I started meditating to keep myself focused on the life that I have right now, not the life that I used to have."

—Jacklyn McNeil, 27, customer service representative — ulcerative colitis

2. Accepting change is often the hardest part.

Courtesy of Alejandro Fernandez

"I was 17 years old when I had my car crash. I went through all kinds of emotions. First I was depressed; I couldn't believe what had just happened. I kept on asking myself, 'Why me?'

Then I was in denial, telling doctors and therapists I was going to walk out of the hospital. Finally, there was acceptance of reality, where I realized this was permanent."

—Alejandro Fernandez, 31, injury prevention speaker — spinal cord injury (quadriplegia)

3. You never really get used to being sick.

Courtesy of Gaylyn Henderson

“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.

Courtesy of Candace Lerman

“I feel like people treat me as if I am lying about being sick. I get offended when people tell me I don’t look sick, or ask how I could be sick when I am working and I look OK. It makes my blood boil.”

—Candace Lerman, 28, law student — immune thrombocytopenic purpura (ITP) and Sjögren's syndrome

5. Years of surgeries and treatments can change how you look at yourself.

Courtesy of Brooke Bogdan

"My body image has changed so much throughout my illness, surgeries, and now with my J-pouch. My weight, the clothes that I wear, how I approach situations, and more.

I do think that I'm a strong person, though. I do believe that I am beautiful, but there are definitely outer traits that I wish were different. My stomach isn't completely flat anymore. My scars bother me and show through some T-shirts, but I know that I am blessed to have the body that I do."

—Brooke Bogdan, 26, marketing coordinator and editor-in-chief for Companion Magazine for IBD — ulcerative colitis

6. You often have to pick the lesser of two evils between side effects or treatment options.

Courtesy of Stephanie Aleite

“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.

Susan Hessing Photography

“During my senior year of high school, I didn’t want to be different. I wanted so badly to fit in. Because of that, I hid my diabetes as much as I could.

That meant no medical devices, and I only checked my blood sugar and gave myself insulin injections when I was able to hide away in the restroom, so no one else could see. That meant I was checking way less than I should have been, and would give my insulin later than necessary, or sometimes not at all.”

—Sierra Sandison, 21, Miss Idaho 2014 and author of Sugar Linings — type 1 diabetes

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.

Courtesy of Kirsty Gibson

“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.

Courtesy of Josh Robbins

“[After testing positive for HIV], I didn't want to ever think about sex again. But that ended. I had to get comfortable with myself first again.

I had to experience all the awkward moments of when I finished the first time and thought about that product being viral. I had to have a nose bleed and be scared to death that I was bleeding and it being OK. I had to get comfortable kissing again, and being intimate. It's a mind-fuck.

Then I had to, and in some ways, still am, getting used to having a very private discussion about my personal medical condition with potential sex partners and not knowing the best time to bring it all up. Do I do it before we chat, after we chat but before sex, way before sex? When? It's a Catch-22.

And then I had to realize that there are people who are negative and educated and like me for me. I had to learn to allow myself to be intimate with them.”

—Josh Robbins, 32, talent & brand management agency owner — HIV positive

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.

Courtesy of Jessica Gimeno

"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.

Courtesy of Laura Rossano

“My family taught me that I was still the same girl despite all of my new challenges. We had to totally alter our life, get the wheelchair, make our whole house accessible, get an elevator installed, and get a handicapped-accessible van.

I remember that the elevator wasn’t installed yet, and my brother was a senior in high school and he wouldn’t go out on the weekends because he knew I liked how he carried me up the stairs best. He gave up his summer before college for me.

I learned that summer that it your family who is going to be there at 3 a.m. when you are crying uncontrollably and the ones at your side telling you that together we would get through it.”

—Laura Rossano, 26, vocational evaluator — fibrodysplasia ossificans progressiva (FOP)

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.

Courtesy of April C. Kendall

“I felt like my body had failed on me. Like I did something wrong in my past that caused my body to alter for all these years before I even knew what was going on.”

—April C. Kendall, 30, health care professional — endometriosis

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.

Courtesy of Sara Armstrong

“I can hold back my tics for a while, but it’s like holding back a sneeze. When it does come, it’s going to be harder and you can’t hold it back forever. I try to 'hide' and 'be alone' when I’m going into an episode because I don’t like to be seen.

People do treat me differently. The few friends I do have are afraid to invite me anywhere because of me being so different, since I might go into an episode or [I could] get questioned by the police because I am 'twitching too much to not be on drugs,' even though I always carry a medical card from my doctor stating that I have the conditions."

—Sara Armstrong, 23, petsitter — Tourette syndrome, cyclic vomiting syndrome, abdominal migraines, severe allergies

18. Keeping up with everyday tasks can be difficult.

Courtesy of Kristin Harris

“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.

Courtesy of Rachel Schlesinger

“I was working at a bakery at the time I lost my hearing. A few months later, I was still adjusting to my hearing loss.

My back was turned to a customer who must have requested something, but I couldn't hear it. When I turned around she was furious and rudely said, 'You're not paying attention! What are you, deaf?' Immediately tears pooled in my eyes.

Fortunately, my co-worker was standing next to me and she stood up to the customer and told her that yes, I indeed am deaf, and that her comment was incredibly rude. I went in the back and cried, because it was the first time someone had made me feel inadequate because of my deafness and it was incredibly hurtful.”

—Rachel Schlesinger, 24, disability services coordinator — dysthymia and hard of hearing

20. Illness can dash your dream of starting a family of your own.

Courtesy of MarlaJan DeFusco

“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.

Courtesy of Sarah Rose Eamon

“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