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Health

18 Things People With Autoimmune Diseases Want You To Know

No, it's not something we're lying about.

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1. Some of us took test after test, waiting so long to get a diagnosis.

Turns out a lot of doctors think you're just having your 10th flu in a year.
people.com

Turns out a lot of doctors think you're just having your 10th flu in a year.

2. Before we got diagnosed, it was hard to describe how we felt, and a lot of doctors didn't think to test for autoimmune disorders.

"I can't feel my body but it also feels like it's been run over by a train and I don't think these rashes are from an allergic reaction."
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"I can't feel my body but it also feels like it's been run over by a train and I don't think these rashes are from an allergic reaction."

3. We have to have a lot of patience when explaining our condition, since tons of people never heard of our disease before.

"Sjögren's? Lupus? Hashimoto? Are these Pokémon?"
DreamWorks

"Sjögren's? Lupus? Hashimoto? Are these Pokémon?"

4. And people will still look at us as if we made it up.

I promise I'm not being "lazy" and I'm not doing this for "attention."
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I promise I'm not being "lazy" and I'm not doing this for "attention."

5. There are a ton of different autoimmune diseases, and they share a lot of the same symptoms.

For the record, autoimmune diseases affect an estimated 23.5 million people, and they include Addison's disease, alopecia areata, antiphospholipid antibody syndrome, autoimmune hepatitis, Behcet's disease, celiac, Graves', Guillain-Barre syndrome, Hashimoto's disease, hemolytic anemia, idiopathic thrombocytopenic purpura, inflammatory bowel disease, inflammatory myopathies, multiple sclerosis, myasthenia gravis, primary biliary cirrhosis, psoriasis, rheumatoid arthritis, scleroderma, Sjögren's syndrome, systemic lupus erythematosus, Type 1 diabetes, vitiligo, and countless others.
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For the record, autoimmune diseases affect an estimated 23.5 million people, and they include Addison's disease, alopecia areata, antiphospholipid antibody syndrome, autoimmune hepatitis, Behcet's disease, celiac, Graves', Guillain-Barre syndrome, Hashimoto's disease, hemolytic anemia, idiopathic thrombocytopenic purpura, inflammatory bowel disease, inflammatory myopathies, multiple sclerosis, myasthenia gravis, primary biliary cirrhosis, psoriasis, rheumatoid arthritis, scleroderma, Sjögren's syndrome, systemic lupus erythematosus, Type 1 diabetes, vitiligo, and countless others.

6. But long story short: Our bodies are in a civil war with themselves.

7. And for a lot of us, "tired" is pretty much our main state of being.

Not I-need-a-nap tired but my-body-is-incapable-of-moving tired.
Twitter: @BeeWells13

Not I-need-a-nap tired but my-body-is-incapable-of-moving tired.

8. Not to mention all the other symptoms you can be faced with: chronic pain, rashes, fevers — a seemingly endless list.

Don't even get me started on photosensitivity.
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Don't even get me started on photosensitivity.

9. We can feel great one week and horrible the next.

Which can confuse people, but trust us, we wish we could predict when a flare was coming.
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Which can confuse people, but trust us, we wish we could predict when a flare was coming.

10. And when we do feel great, it's the best feeling in the world.

Until a flare comes to ruin all the fun.
DreamWorks / Via youtube.com

Until a flare comes to ruin all the fun.

11. We constantly play a game of "maybe this could work" when it comes to medicine.

Our emotions can range from "hopefully this time" to "I know this will never work, just like the others."
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Our emotions can range from "hopefully this time" to "I know this will never work, just like the others."

12. Dealing with the physical side effects that come with meds can be one of the most difficult things imaginable.

Gaining weight, losing weight, growing hair, losing hair.
Twitter: @MarchingDuck

Gaining weight, losing weight, growing hair, losing hair.

13. As well as the mental side effects.

Yeah, it's hard not to get depressed when you feel like you're confined to your bed all day.
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Yeah, it's hard not to get depressed when you feel like you're confined to your bed all day.

14. You kind of want to punch anyone who tries to recommend something like "exercise more!" as a treatment.

When you feel like your joints are trying to kill you, it's kind of hard to move around.
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When you feel like your joints are trying to kill you, it's kind of hard to move around.

15. We miss out on a lot in life.

Because for some, even seeing the lights from the TV can trigger a massive pain spell.
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Because for some, even seeing the lights from the TV can trigger a massive pain spell.

16. Because for some of us, our illness is something we'll have for the rest of our lives.

17. But hearing about other people going through the same thing can make us feel not so alone.

18. And having people ask us questions before immediately jumping to conclusions makes us very, very happy.

For more information on autoimmune diseases, you can head to the website of the American Autoimmune Related Diseases Association, Inc.

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