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What Others Often Don't Understand About Autoimmune Diseases

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I have two autoimmune diseases: celiac disease and Hashimoto’s thyroiditis. These are some of the typical “but you don’t look sick” types of conditions.

Autoimmune diseases happen when the immune system is faulty and mistakenly attacks our own healthy organs and tissue, leading to sometimes irreparable damage and internal inflammation.

They are some of the least treatable and least understood conditions – this applies both to the medical profession and the rest of society (and of course, the patients themselves). What people don’t seem to understand is how serious and how sick these conditions can make the people who have them.


Just because I’m gluten-free doesn’t mean my celiac disease is fixed. Yes, just a little bit of gluten will hurt, and no, I won’t just throw it up again and then be fine. I don’t like bringing up the fact I’m gluten-free all the time. In fact, I’m embarrassed to bring it up most of the time, but most days, activities and social interactions all involve food in some way and the pain, discomfort and lifelong implications of not being strict with my diet are not worth my moment of embarrassment.

Yes, I am on medication for my Hashimoto’s, but what people don’t understand is that it is not a magic pill that makes it all better and causes all my symptoms to disappear. I will still have “flare” days where I feel like absolute crap, with migraines, aches all over my body, emotional outbursts, fatigue, nausea and random vomiting, depression and anxiety attacks (to name only a few symptoms). There is nothing that can be done to prevent this, and there is very little I can do when it happens but try to sleep it off and hope it passes quickly.

The days when I “feel fine” are likely the days when, if others were in my body at that moment, they might say they “felt awful.” Same for when I say I’m exhausted by fatigue and someone replies with “We’re all tired” or “I’m tired too” or even “You can’t be more tired than me.” Normal tired and thyroid tired are not the same thing. If you felt my fatigue symptoms, where everything in the mind and body feels heavy, like thinking through thick fog and sluggish like running through waist-high mud, you would likely not compare your type of tired to my type of tired again.

Please try to understand that sometimes I just need a little patience and understanding. If you get annoyed at how it seems like I’m “always sick,” take a second to look at that from my perspective. Yes, sometimes it feels like I’m always sick and always hurting. Autoimmune diseases are lifelong and incurable, so chances are, I will have this sickness and these “flare-ups” for the rest of my life. I am annoyed at myself, at my own body, most of the time. I am at war with my own body. Believe me when I say I am not after attention and would rather not be ill at all.

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Thinkstock photo via IG_Royal.

Originally published: June 16, 2017
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