20 Photos That Show the Reality of Chronic Illness

How do you describe what chronic illness really looks like? It’s tough to get people to understand the challenges you go through every day, especially when at first glance, your illness may seem “invisible.” If people saw the doctor’s appointments, treatments, the effort it can take to go to work or spend time with friends, and how you fight through it all, they’d see the strength it takes you to manage your health while living the best life you can.

We asked our Mighty community to share a photo of the reality of their illness. Some shared a moment where they felt strong, others shared the moments when they were at their lowest — but all can hopefully open eyes to the truth about what someone with chronic illness “looks like.” If this is your reality, too, know you’re surrounded by others who understand the struggles (and triumphs) you experience every day.

Here’s what our community shared with us:

1. “At 19 years old I was diagnosed formally with SLE lupus nephritis… I’m a UCSF transplant candidate but can’t receive an organ if my lupus is active. I’m 26 years old with a health directive and my funeral wishes ready. But in so much darkness and suffering has come even more light in my life.”

2. “Still out coaching tumblers with a cast on one foot and a boot on the other with torn and ruptured tendons in my ankles. Hooked up to my feeding tube and TPN and saline through my central line just so I have the energy to make it through the day. It takes a lot out of me and a lot of prep, but I still try to live my life over these obstacles.”

3. “Autoimmune diseases are so hard to diagnose. This picture is from when my doctors had no idea what was causing all of my symptoms. I was constantly pumped full of different drugs in hopes that one would help me. People do not realize that it can take years to get relief from your symptoms and get a proper diagnosis.”

4. “In this picture, I was about to direct my first newscast of the day. I have chronic daily migraines that steal my vision from me, but life doesn’t stop for a migraine — I just have to put on my sunglasses and keep going.”

5. “My husband smooching me during a recent iron transfusion for my severe iron-deficient anemia as a result of having Crohn’s disease for over 20 years. He makes me feel strong when I am at my weakest, despite being a type 1 diabetic himself.”

6. “The one thing that truly has power over my Ehlers-Danlos syndrome is strength training. It can’t heal me, but it enables me to live a blessed and mostly normal life, even if I do so with a lot of pain hidden behind my smiles and tiny muscles. Lifting empowers me. It helps enable my muscles to better compensate for weak tendons and ligaments, and it helps strengthen those same tendons. I couldn’t truly live without my gym.”

7. “These are old pictures but it’s still one of my favs. Holding all of my babies that I shouldn’t have been able to have. Even though it’s tough having a chronic illness and being a mom, they are my reminder of how blessed I am.”

8. “My mum took this picture after my 13th surgery for hidradenitis suppurativa. She said I looked at peace, unlike what she was used to seeing. She never saw me sleeping so peacefully unless sedated because I’d be in so much pain otherwise. This was also my last surgery. I got tired of getting operated. My next cyst came a week after this surgery and I figured that I had to accept my life. Been happier since!”

9. “Taken to show the truth of being pregnant while managing a chronic illness. It’s only relatively recently that people with cystic fibrosis lived long enough to reach adulthood, let alone get pregnant and sustain their health while maintaining the pregnancy… Struggling with lung infections, maintaining enough calories for themselves plus baby, and just having enough stamina to manage life were all problems that had to be overcome — but the day after this photo was taken, a healthy baby boy came into the world! Worth every minute of the struggle.”

10. “This was the first time I stood on my own. Even with help of the bars, it was me holding myself up. This is a very esoteric situation — unless you’ve been in a position where you’ve been unable to hold yourself up, this picture won’t mean a thing. However, to every person that was unable to hold themselves up, one way or another, this is a picture of triumph. This is a picture of ‘The Mighty.’”

11. “Many people only associated disabilities with barriers and weakness, but this picture reminds me we all need support from someone or people to ‘get up.’ (Took two or three people to get me on the camel, one to push me up, another pull me over and third steady me… but made it!) I have rare condition chronic inflammatory demyelinating polyneuropathy (CIDP). This picture was from first solo holiday in Morocco and I came back liberated as it reaffirmed a ‘limiting condition doesn’t have to limit my life experiences.’”

12. “This photo is so important to me because it’s the first photo that I shared on social media that was really honest about my chronic illnesses. Though it didn’t show the worst days, doctor appointments, hospital stays, blood work, or test results, the photo did let people see a little of what I was dealing with and what the smile, makeup and laugh was hiding.”

13. “The reality of gastroparesis. Not being able to eat normally. I have a feeding tube in place that delivers formula to my small intestine. I bring my backpack everywhere since I am on 24-hour feeds. I got to model with my feeding tube.”

14. “Me finally getting out of the house… Sometimes that is an amazing feeling. And sometimes it makes me feel very low because I used to be able to take my grandkids everywhere but now that doesn’t happen. So even though they are happy moments but at the same time they remind me what I can no longer do.”

15. “Spine degeneration L3, L4, L5, S1 muscle spasms frequently. I’ve had four back surgeries, still have pain, pills ain’t cutting it, home alone, was once successful guy been out work seven years now, depressed, anxiety anger, lonely, loss of desire and why dream. But I still just keep the faith. And pray.”

16. “I have POTS, rheumatoid arthritis, joint hypermobility syndrome, Raynaud’s and undiagnosed digestive problems. This is my reality. I am 32 years old. I lost my ability to work at 28 years old was declared disabled the day before I turned 30. I had my driver’s license taken away. I take a handful of meds daily. Give myself weekly injections. Go to the hospital twice a week for IV saline to help me not pass out as much. Those are my trips out of the house. And my life revolves around doctor appointments. It’s not how I planned my life but things happen. I would be lying if I said it’s not a daily struggle. I try to stay positive though it’s hard some times.”

17. “This picture was taken two years ago after I had spinal surgery. It is one moment captured by my mom in the middle of the night. She wanted to remember my first steps following the operation as I learned to walk again. The nurses were determined to get me out of bed and to show me that I would make it through the aftermath. They wanted to prove that I could walk… This is one snapshot of a very long and painful journey through a mess of medical procedures, hospitalizations, tests… Many hugs to all who face illness and pain.”

18. “So many people don’t know that this is my life. Weekly doctor visits and tests, being stuck with a needle so much my arms are nothing but black a blue. They say it’s in my head, and I agree. Since my head is my control center of everything. No matter what, just gotta smile through it. Hell, I’m happy just to finally have my diagnosis to my chronic fainting, and such.”

19. “Typical day, my beautiful sent-from-above boyfriend helping me with the Tramadol! I have Ehlers-Danlos syndrome and he’s been the best through it all!”

20. “Both my reality and a power moment. Both a high and a low. Getting a new central line placed after beating sepsis (a life threatening blood infection), last week!”