15 Things People Want You to Know About Living with an Invisible Illness

Written by Michael Kasian on September 28, 2017
invisible illness

Life with an invisible illness can sometimes be an isolating experience. Certain chronic conditions, like ADHD, multiple sclerosis, depression, and COPD, can’t be seen, so it’s hard for others to know what it’s like to live with such challenges.

We asked members of our community to help #MakeItVisible by opening up about what it’s like to live with an invisible illness. By sharing their stories, we all will understand a little bit more about the challenges each other face day in and day out.

“Just because I look good does not mean I’m feeling good.” — Pam S., living with rheumatoid arthritis

“I wish people understood that even if everything in life was easy, I’d still have doubts and depression.” — Amber S., living with depression

“I think so many people think that Crohn’s is just a ‘pooping disease,’ while in reality it’s so much more than that. My joint pain and fatigue can be downright debilitating at times and people don’t seem to understand the seriousness of that.” — Jim T., living with Crohn’s disease

“People think I’m not social and my family doesn’t understand I have fatigue sometimes. Thyroid issues can make you depressed one day, happy the next, and fatigued the next, and the weight gain can be a mental /emotional battle all its own.” — Kimberly S., living with hypothyroidism

“We are conquerors, we are survivors, but we are also sufferers. It is commonly misunderstood that a person cannot be both, but I wake up and go through each day understanding the reality of my health circumstances, which includes being honest with myself and those around me. Discussing personal limits and honoring the body’s boundaries should not be taboo topics.” — Devri Velazquez, living with vasculitis

“I’m still ME. I still like to do things, have company, and be appreciated.” — Jeanie H., living with rheumatoid arthritis

“If I hermit for a while, don’t put me down for it. If I want to leave early because my stomach hurts: it hurts. It’s not just, ‘Oh, I don’t feel well.’ It’s, ‘I feel like I’m getting my insides torn out and I need to leave.’ I seem stubborn, but it’s because I know what triggers my anxiety and I’m trying to keep out of situations that do not support my well-being.” — Alyssa T., living with depression, anxiety, and IBS

“I wish people wouldn’t jump to conclusions based on appearances. Even though someone who is chronically ill may look ‘healthy’ and act ‘normal,’ we are still chronically ill and we still struggle on a daily basis to do simple tasks and fit in with everyone else. Having my makeup done and wearing nice clothing doesn’t automatically make someone healthy.” — Kirsten Curtis, living with Crohn’s disease

“Because it’s invisible, I sometimes will forget that I’m living with any illness until, WHAM! The chronic pain kicks in and I’m quickly reminded that I have special limitations. It’s truly a mind flip from day to day.” — Tom R., living with Crohn’s disease

“Stop telling me to ‘drink this juice or ‘eat this to magically cure all.’ Stop telling me to ‘exercise more.’ And stop telling me that because I’m still working, my pain must not be that bad. I need to eat, have a roof over my head, buy medicine, and pay doctors.” — Kristin M., living with rheumatoid arthritis

“It’s beyond my control to not judge myself for my decisions. I can’t help but feel frustrated and anxious throughout the day. It’s not my choice to be this erratic, trust me, and anyone else that lives with mental health issues didn’t choose this path, either.” — Jane S., living with OCD, anxiety, and depression

“People always assume I’m lazy when they have no idea how much effort it takes to just be up and about.” — Tina W., living with hypothyroidism

“I wish people would understand that I am not just being lazy by not working. I miss my independence. I miss the social aspect of work.” — Alice M., living with osteoarthritis

“People just hear arthritis and think of their elderly relatives. It’s not just for older people, and it impacts more than just your joints.” — Susan L., living with rheumatoid arthritis

“The fatigue, the pain, the weight gain, brain fog, anxiety, and depression are all part of my life and no one can tell. Many people think we’re all just lazy, fat, and not motivated, and it’s so far from the truth! I also wish people would understand how much this disease affects us emotionally and mentally. We turn into someone physically that we do not know. For me, it is extremely difficult seeing how much I have changed in my looks. It is heartbreaking to be honest.” — Sherri D., living with hypothyroidism

To find out how you can shine a light on invisible illnesses, visit our #MakeItVisible homepage.

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