What Sick Looks Like: Invisible Illness
8 Things Women with ‘Invisible' Diseases Want You to Know
Don't judge a book by its cover.
"I have a condition called hypertrophic cardiomyopathy, a rare condition in which the heart muscle becomes abnormally thick, making it difficult for my heart to pump blood. On the outside, I look fine, but that means most people don't see you as being in need of any special accommodation.
"I have a handicapped sticker on my car, and I've gotten into screaming matches with people who have told me I'm a b—ch because they don't believe I actually need it. A few days ago, I was getting out of my car when a guy walked past me with his wife and said, 'Oh, she doesn't look sick to me.' It enraged me. I told him I was actually on a waiting list for a heart transplant and it takes so much energy for me just to walk, but he didn't believe me. It made me so furious that I said to his wife, 'I'm sorry you have to live with him.' Sure, I don't need a wheelchair or a walker, but I can barely breathe when I walk."—Lisa Salberg, 48, Rockaway, NJ
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Please offer to help.
"When I was in my twenties, I was diagnosed with vasovagal syncope, a condition that triggers your heart rate and blood pressure to drop suddenly, causing dizziness, nausea, and even fainting. For some reason, my syncope was also tied into my GI tract, so instead of just passing out my would start violently convulsing and everything would come out of both ends.
"When I was in my late thirties, the condition really flared up, and I was constantly fainting and having to go to the hospital. I had a toddler and a husband who worked long hours. I was so lucky that many of my friends and family members stepped up to the plate to support me—I could always find someone to meet me at the hospital and another person to watch my daughter. It was really crucial that I always have someone at my side, because I couldn't advocate for myself in the ER given the state I'd be in when I got there. If you know a friend is battling a disease, no matter how 'invisible,' please reach out and ask how you can help. She needs it more than you can ever realize."—Alexandra Petticome*, 45, New York City
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Please understand I sometimes need my space.
"I have premenstrual dysmorphic disorder (PMDD), which means that for about one week each month I sink into a dark funk that seems impossible to climb out of. If someone gives me a sideways look or raises their voice even slightly, I cry. I take Prozac for the last half of my cycle, which helps, but there's nothing I can do to 'snap' out of it. It's part of who I am, part of my biology.
"Unfortunately, people just view it as glorified PMS and don't understand if I am weepy, or short-tempered, or simply just so miserable I can't bring myself to get out of bed. It's terrible to feel that your mind is so out of control for several days every month, and it's difficult with a job because you can't show those same emotions that you so desperately seek to hide." —Carol Dicker*, 27, Montclair, NJ
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I may look put together, but I'm falling apart.
"Two and a half years ago, I checked myself into a psychiatric hospital for electroconvulsive therapy to treat severe, debilitating depression. The nurse looked at me and said, 'You don't look like a patient!', which dumbfounded me. It seemed such an odd, unfortunate thing to say. People really have this notion that someone with mental illness should look like they are straight out of , when in reality so many of us look like we're on top of the world. When I was at my sickest, I still got up, showered, put on makeup, and dressed nicely for work. No one in a million years would ever know what I was going through."—Risa Sugarman, 42, West Hartford, CT
Don't feel sorry for me.
"I personally don't like to complain about my aches and pains due to fibromyalgia—it's not something I enjoy talking about. I'd rather focus on the positive things in my life. A lot of people are under the misconception that I'm depressed and constantly indulging in a self-pity party. That's not true. I'm doing my best to live the best that I can.
"That said, a lot of other parents at my son's school assume that because I don't work, I have all this time on my hands to volunteer. The reality is, it doesn't take a lot to wipe me out, and I need to pace myself and not take on more than I can handle. But when I try to explain that, I often get an eye roll or an 'oh geez' look. Just because you can't see it doesn't mean it's not real."—Melissa Fortin, 42, Farmington, CT
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No, even if I really, really try, I still can't do it.
"I suffer from such severe claustrophobia that I can't ride an elevator or go on an airplane. People don't understand that—they think that if I just pop a Xanax and really put my mind to it I'll be fine. They say, 'But you drive, so why can't you fly?' or 'If you can ride the subway, you can handle an elevator.' They have no clue that the anxiety I experience in those situations is completely crippling. It's like telling a quadriplegic that if she just closes her eyes and wishes it and visualizes it enough, she'll be able to walk."—Devon Simmons*, 49, White Plains, NY
Don't offer unsolicited health advice.
"I can't tell you how many unhelpful, unwanted suggestions I've been given about my narcolepsy. I've been told I should give up gluten, exercise more, get tested for food allergies... you name it. I'm already a health nut and have been for a long time, and I have a legitimate disease. It's not a flaw in my lifestyle. There's no cure.
"I also worry that people think I'm a slacker, which isn't the case. My narcolepsy causes fragmented sleep, so I never feel like I've gotten a good night's rest. I've always been a very motivated, type-A person—and I still am mentally, but physically I can't be that person anymore. I have physical limits that I have to respect. And I have to sleep a lot. Trust me, I don't want to—it's not fun feeling like you're sleeping your life away. I usually sleep nine to 10 hours a night, sometimes more. Getting that much sleep doesn't really make me feel better—you still feel tired during the day, because that's the nature of the illness. But if I sleep less and get overtired, I feel a lot worse. I always say this disease has made me realize why sleep deprivation is such an effective form of torture—you really do feel like you're losing your mind."—Jennifer Lee, 42, New York City
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Take me at my word.
"Like 10 percent of American women, I suffer from endometriosis. And like many women who have chronic 'invisible' conditions, I wasn't diagnosed for years. During that time, I was told by doctors, friends, and even family that 'it's all in your head,' 'it's normal,' and, my favorite, 'you're overreacting.' After years of hearing these things from numerous doctors, you start to convince yourself that your pain and suffering just might be your normal. So you stay afloat and functioning on the outside and suffer the inner turmoil and pain alone. I'd like those who don't live with illness to try to imagine living with mysterious pain, tenderness, inflammation, etc., for years on end and no one who understands why."—Emily Maloney, 24, Los Angeles
*Names have been changed.
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