Living with an invisible illness is often full of unfortunate surprises, mostly because symptom flare-ups can happen at any time without warning. So while someone may look fine to the untrained eye, it’s possible they’re fighting something quite challenging.
Because invisible illnesses, like arthritis, Crohn’s disease, bipolar disorder, and hypothyroidism can’t be seen, it’s hard for others to know what it’s like to live with such challenges. In an effort to help #MakeItVisible, we asked members of our communities: How does your invisible illness impact your daily life?
“Sometimes I don’t really know if what I’m saying is OK, or if whoever is listening even cares. My personality disorder makes me constantly question whether my behavior is acceptable and if the people around me actually want to be with me.” — Shannon S., living with borderline personality disorder
“Imagine having to stay home because it hurts too much to wear shoes. Then imagine that normal walking feels like it’s on two sprained ankles, but that is not enough to keep you inside, it’s the shoes. This is your new normal.” — Lorraine S., living with rheumatoid arthritis
“It’s hard for me to engage in conversation with anyone. My mind literally shuts down. Phone conversations scare me and one-on-one interactions are hard. I have limited friends because I’m not social and my fatigue keeps me indoors a lot. It sucks.” — Lisa A., living with social anxiety
“The state of exhaustion is 24/7 no matter what I do or how I sleep. Although I am working and being active, I am still in daily, constant pain. My smile and laughter are genuine most of the time, but sometimes they’re just a cover-up.” — Elizabeth G., living with Crohn’s disease
“There are days where you have a good old cry because it hurts so much, it just gets too overwhelming.” — Sue M., living with osteoarthritis
“I find myself having to take frequent breaks from physical activities such as bathing, styling my hair, putting on makeup, and walking. I also keep plenty of medical masks, ear plugs, latex gloves, and hand sanitizer in my purse for days when I am out and about around a lot of people and at greater risk for catching a virus or an infection.” — Devri Velazquez, living with vasculitis
“My illness changes on an hourly basis. One minute you can cope, the next minute you can barely put one foot in front of the other, and all the while no one can see what’s changed.” — Judith D., living with rheumatoid arthritis
“I have my good days, mentally sharp, physically bad ass, but I have a lot of really bad days, those ‘I don’t even want to get out of bed’ days.” — Sandra K., living with hypothyroidism
“I can feel totally normal and on top of the world, when out of nowhere I’ll get a random flare-up of brain fog, fatigue, and chronic pain in my stomach and joints. I basically have to put my life on pause to rest and recover, otherwise I’ll get anxious and experience more intense symptoms.” — Michael K., living with Crohn’s disease
“Although it’s best to keep moving, once you are bone on bone in both knees, moving is difficult and it’s not recommended that you walk more than two miles.” — Holly Y., living with osteoarthritis
“It affects every moment of my daily life. You make adjustments and smile and learn to live with it, but I feel like I’m falling off a cliff in slow motion with no way to stop it. The grieving process is repeated over and over with each new loss of function. I used to run and dance and wear heels and walk like a normal person, at least in my dreams, but not anymore. It is always with me now.” — Debbie S., living with multiple sclerosis
“I have OA, which seriously impacts my spine, and as a result I can no longer drive, work, or do most household chores.” — Alice M., living with osteoarthritis
“The exhaustion I battle every day is intense. When I hear people say, ‘Oh yeah… I’m so tired too,’ I want to tell them, ‘Call me when you try to open your eyes, but you don’t have the energy to.’” — Laura G., living with hypothyroidism
“Pain doesn’t stop just because the sun goes down. I haven’t slept right through a night in years. I’ve learned to accept some nights are only two hours of sleep, if that at all.” — Naomi S., living with rheumatoid arthritis
“A lot of my daily struggles have to do with going to school. Because of my invisible illness, I’ve developed malnutrition over the years, which has negatively affected my memory and makes being successful in school much more difficult. It can also be hard to be social. My illness is so unpredictable, I never know when I’m not going to feel well and it’s always upsetting to cancel plans or have to leave early.” — Holly Y., living with Crohn’s disease
To find out how you can shine a light on invisible illnesses, visit our #MakeItVisible homepage.