27 Photos That Show What It Looks Like to Be 'Functionally Ill'
As many in our community know, chronic illness is a spectrum, and everyone affected has varying abilities and manifestations of their condition(s). Some may have symptoms or side effects that are largely “invisible,” and some may be able to spend a day actively out and about – but that doesn’t make the person’s illness any less real than someone who has more visible symptoms, or perhaps has more physical limitations.
Sometimes, though, those with invisible chronic illnesses who are seen out and about are unfairly assumed to be “not that sick.” Mighty contributor Mikayla Burnett addressed this issue in her essay, I’m Not Fine, I’m Functionally Ill, explaining that she feels misunderstood because even though she lives with a chronic illness, she doesn’t “look” sick. “You can’t assume someone is OK based on their public demeanor and appearance,” she writes.
Just because someone is “functional” or “looks healthy” doesn’t mean they aren’t facing health challenges that deserve to be taken seriously. We wanted to correct the misconception that being chronically ill always has one “look,” so we asked our Mighty chronic illness community to share a photo that shows what it looks like to be “functionally ill.” Let us know if you can relate in the comments below.
Here’s what our community shared with us:
1. “I climbed Mt. Machu Picchu with a cane. Postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (EDS) made it extremely difficult but it didn’t stop me. The climb was mostly steps. Two thousand ancient hand carved Incan steps… The way down was much more difficult as my legs would barely hold me. My wonderful mother (in the photo with me) physically supported me all the way back down those 2,000 steps. Great bonding time!” – Ashlee P.
2. “It had taken me three hours to do this makeup look because I had to continue taking breaks as the chronic pain became too much. By the time I’d finished I was in agony and had a headache. But hey, at least I looked ‘normal.’ (Cushing’s disease, inflammatory polyarthropathy, anxiety and being tested for chronic inflammatory response syndrome/toxic mold illness).” – Hanna R.
3. “Celebrating my birthday last year while recovering from pneumonia. Only a few days before this picture was taken, I was discharged from the hospital after being admitted from complications from said pneumonia. I suffer from multiple chronic illnesses and chronic pain, so of course the pneumonia made everything 10 times worse. But this is me, trying to function and enjoy my special day!” – Jae M.
4. “This is my definition of ‘date night’ – lying in bed cuddling, because going out while having severe pain, nausea and vomiting isn’t fun. But I still look ‘normal.’ (EDS, gastroparesis, POTS and anxiety.)” – Charmane S.
5. “You can’t tell but I’ve been having several seizures lately [due to] Lyme disease. I choose to look like I’m functioning in photos so my family can see the memories made and not my illness.” – Soukna W.
6. “Here is the perfect picture of me being ‘functionally ill’: I have neurocardiogenic syncope and POTS, hence the IV infusion treatment. I also suffer from chronic and often debilitating pain due to interstitial cystitis, endometriosis and irritable bowel syndrome. Without the IV in my arm, I look totally normal – a full face of makeup and fixed hair. It’s the curse of invisible illness – although I’m thankful that I look OK, it’s so hard for people to believe that I suffer on a daily basis based on how most people see me every day.” – Alexis P.M.
7. “Multiple chronic invisible illnesses, service dog user and still living my dream of traveling! It’s not without its challenges, but without knowing if/when I won’t be able to travel any longer I’m going to do all that I can to keep on.” – Bay H.
8. “Sitting outside by the pool with my daughter, hiding from the sun because my meds make my skin burn. My poor child, I can only really tolerate 45 minutes on a good day.” – Bailey S.
9. “This is me on my wedding day. My incurable conditions don’t give me a break just because it’s a special occasion. It was the most perfect beautiful amazing happiest day of my life but there was also the usual symptoms and issues of being chronically ill and disabled. Although none of that mattered that much on that day. Marrying my wife was the most magical experience. Although I had to leave halfway through the reception as my nurses came to connect my TPN.” – Leigh B.
10. “No thyroid, the meds are off again, and anxiety/depression are through the roof… but Game Face it is. One day at a time, right? Lots of beautiful people here, glad to ‘see’ you all! Cheers!” – Pete H.
11. “Out frog hunting on a severe flare day while waiting for my surgery to excise endo and remove adeno. Life doesn’t stop for me but I do my best to take care of myself while taking care of everyone else. No guilt for bad days.” – Jodi N.
12. “Me being goofy at the doc’s office while getting a breathing treatment. I caught lower left lobe pneumonia back in April and I’m currently still coughing. I have osteoarthritis in my spine, polycystic ovary syndrome (PCOS), major depression, anxiety, diabetes and arthritis in multiple joints that have yet to be diagnosed. I’ve got an appointment in August to see a rheumatologist, hopefully I’ll get some answers.” – Preference R.
13. “Lying with one of my dogs Gia while trying to be normal with one of my frequent UTIs. I have interstitial cystitis, celiac, fibro, vitamin D deficiency, IBS and a multitude of food allergies. I may look normal but it’s so hard to feel like a normal person sometimes.” – Hannah J.
14. “Out shopping with EDS and POTS. Pretty excited to see a toy wheelchair!” – Lidia K.M.
15. “I have so many things wrong, going haywire. I cry a lot. Yesterday I went swimming, haven’t done it in years, today I can’t walk. The pain is unbearable. I have epilepsy, fibromyalgia, arthritis, muscle spasms, cramps, IBS, depression/anxiety, migraines, memory loss. No longer able to drive. I am on far right, took a trip with my sisters.” – Alice N.
16. “Being able to nanny! Even on my toughest days, it seems they know, and are extra cuddly/well behaved. (Fibro, chronic migraines and cervical spine issues.)” – KaSaundra J.B.
17. “Functioning while chronically ill for me looks like this: Doing my best to look bright and happy for a couple hours of uni before crashing back into bed in the afternoon. I struggle with endometriosis, CFS/ME, fibromyalgia and hemochromatosis. Nothing is easy but it’s worth pushing for the things I love to do.” – Alicia-Boe N.
18. “I’m a full-time employee and caregiver to my husband and two autistic boys. I struggle with lupus and fibromyalgia. It is not easy living with chronic illness. I like challenges but I never thought getting through life with chronic pain would be one of them. I remind myself every day that I am a warrior, I am a superwoman and with God’s Holy Spirit… I can get through each day. He’s the only one who truly knows what I’m going through. Plus, putting a smile on my face doesn’t hurt.” – Sindy L.
19. “Me trying on clothes to try to beat the summer heat (it’s causing major flares) right before an IV appointment that ended in a six-hour ER visit… It just proves I can be completely fine one minute and the next, be completely out of commission.” – Celaena A.W.
20. “I have chronic fatigue and sarcoidosis. I’d had a really good week health-wise that week so I decided to go to a horse competition. I made my friend come with me so that if I got too tired then she could drive us home. I made sure that I had the day afterwards to re-gather all my spoons. My friend snapped this photo and I really like it. We just look like any other competitor out there.” – Natasha G.
21. “Getting my infusion for Crohn’s/rheumatoid arthritis (RA) so I can function daily. Also have generalized anxiety disorder and fibromyalgia.” – Nicole C.P.
22. “A bruise from a softball. I was functional enough to play but had consequences here and there. Bruises were a normality when I played. I often got them up my thighs from sliding as well.” – Maelynn A.
23. “Trying to remain positive while on vacay at Disney. I was definitely in bed by 6 p.m. every day. Heat and humidity are not my friends.” – Ekka N.
24. “Snuggling my daughter and letting her have screen time because I was too sick to do anything else. I’ve been fighting a Crohn’s disease flare for the past year.” – Megan Z.
25. “I have sickle cell disease which means chronic pain, but I still had to go to class if I wanted to graduate college! Which I did.” – Destini H.
26. “Keeping my body strong with cystic fibrosis, 45 percent lung function.” – Sally E.
27. “Me at the Grand Canyon for the very first time this past February during a 10-day adventure through Arizona. I have Raynaud’s and on this day it was about 20 degrees at the Grand Canyon so I’m in double/triple layers. However, it was easier for me than if it was 80 or 90 degrees. By the end of the trip, we were in temperate Tucson. I have Sjogren’s syndrome with a laundry list of associated diagnoses and am disabled. I’m 47. My husband and I love to travel but as most of you know, it is quite a feat, especially when flying is involved. We try to take a major adventure trip every one to two years. We always travel just the two of us so I can accommodate my medical needs, I go on a course of prednisone so I can function, and it takes months and months to prepare so I can travel safely. But, you only go through this life once, so we make it work.” – Christine M.