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21 Secrets People With Invisible Illnesses Wish They Could Reveal to the World

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Along with physical symptoms, those with “invisible” illnesses must deal with another layer of challenges: the outsiders who don’t understand or believe their illness because it can’t be seen.

We teamed up with PostSecret to collect the secrets of people living with invisible illnesses and discover what they wish others knew about their lives. We believe revealing the “hidden” challenges of living with these often debilitating conditions will help spread awareness, understanding and most important, empathy.

Here’s what people with invisible illnesses wish you understood:

1. “What I really want to say when I say, ‘I’m cured’…”

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4. “People always ask, ‘Are you better?’ Here’s the thing —”

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5. “Most of the time, I’m OK. I can control my anxiety with medication, but the days I can’t are the days I can’t stop the spiral of intrusive thoughts. I can’t always get out of my own head. I feel so trapped. Some days, I just can’t.”

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6. “Living with a chronic pain that doctors can’t figure out hurts more than the pain itself sometimes. Whenever another test or surgery comes back ‘normal’ people try to cheer me up by saying, ‘At least it wasn’t cancer’ or something to that effect. In no way does that help. I just want to know what’s wrong with me… Just because they didn’t diagnose me with ‘something worse’ doesn’t mean I’m not suffering…”

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7. “This is the face of someone with fibromyalgia. Behind that smile is a wife, mother and friend suffering silently through excruciating pain, and 80 percent of the time when I say, ‘I’m fine,’ I’m lying.”

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8. “I maintain my game face all day every day because the alternative is to let you see how my illness really affects me — the joint pain, the fatigue, the array of meds and the internal complications… Please don’t mistake this for me being healthy. I still need help sometimes.”

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9. “The hardest part is not that I had cancer, it’s not the minimal scar or the least aggressive treatment. The hardest part is explaining why I’m 29 and no amount of sleep will ever make me un-tired. The hardest part is getting an endocrinologist to listen to me when I say I don’t feel like myself, that I’ve never been more depressed. The hardest part is hearing my OB-GYN laughing outside of the exam room when she reads that I believe I may be in early menopause because I’m profusely sweating and not having a period. The hardest part is explaining to people that having cancer wasn’t the hardest part.”

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11. “I used to complain about people saying ‘I look good.’ But…” post secret invisible 12

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13. “Today is a good day — I’m actually wearing heels and a dress. Please understand those days (or weeks) where it seems like I’m not even trying — baggy clothes, unkept eyebrows, etc. are the days so filled with pain, I’ve got to be kind to myself and not add any more for ‘beauty.’”

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14. “This was me at 22, half my life ago. I had an eating disorder, and that night, my friend was trying to take silly pictures to cheer me up because I was suicidal. That’s his hand on top of the statue’s hand in Fountain Square in Cincinnati. My eyes look dead because I couldn’t stop thinking about how I was too fat and ugly to be out in public. What people look like and how they see themselves are often two completely, totally different things.”

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15. “This is a depiction of how it feels to have panic attacks. I fear that it will always hold me back from living my life to the fullest.”

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Artist: Kristen Hernandez (me)

16. “Sometimes I want to keep my chronic illness a secret so people don’t treat me like a victim or make judgments about what they think is best for me, but I also want to be open about my struggle with inflammatory bowel disease so the stigmas are diminished and I can be a resource to other people going through the same challenges. So far, sharing my truth has been the right choice.”

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17. “Being in a mental hospital does not mean I am weak or ‘crazy,’ it means I needed help and I got it. Just as borderline personality disorder doesn’t make me manipulative or a nasty person. Don’t judge me on the things you know nothing about or on my scars. I tried to take my own life 13 times in nearly 10 years because of my mental illnesses and now I’m finally on the mend. Do not judge the battle when you have no idea on the war.”

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18. “I get told so many times to try some herbal remedy or whatever and they don’t work. There is no magic cure for my pain or my mental suffering.”

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21. “Made just last night to show inside my mind.”

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If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Originally published: April 18, 2016
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