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The Real Faces of Autoimmune Disease

What is autoimmune disease? You are likely hearing this term more and more every day, and you are likely meeting more and more people who claim to have one. What does it mean, though?

“A disease in which the body’s immune system attacks healthy cells.”

That is the generic definition. Basically, it means that in some way that person’s body has turned against itself. It has begun to view healthy tissue as “the enemy” and the immune system starts to attack and break down things that it shouldn’t. This starts to make certain organs within the body function improperly, creates a wide variety of sometimes debilitating symptoms, and usually means that person gets to be on a lifetime of medications to help control their disease and keep their organs functioning properly so that they can live their lives as best as possible.

It’s really hard to fully describe what having an autoimmune disease is like to someone who is not experiencing it themselves. I feel that even the description above doesn’t do full justice to trying to get someone to understand what it’s like living with an autoimmune disease.

I have Hashimoto’s Thyroiditis, as an example. With this autoimmune disease my immune system has viewed my thyroid tissue as an enemy, and has thus started attacking and killing my thyroid, which has placed me into a state of hypothyroidism. The kicker with this version of hypothyroidism vs. a state of hypothyroidism that comes without Hashimoto’s is that wider array of symptoms I mentioned above.  What are some of these symptoms? Some that I, personally, have experienced include: brain fog, severe joint pain, muscle weakness, weight gain, dry/itchy skin, chronic fatigue, depression, anxiety, puffy eyes, sensitivity to cold, tightness in throat, enlarged lymph nodes…

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The disease that I have is just one of many, many autoimmune diseases that have been identified (see a full list here). They are exceedingly hard to diagnose because many of them have cross-over symptoms with each other and various non-autoimmune diseases as well. If not properly diagnosed, treated, and monitored, there are some of these diseases which can be fatal as well.

They are hard for doctors to predict and diagnose because the jury is still out on what really, really causes these autoimmune diseases to form within people. There is no set formula and no way to fully predict that someone may or may not develop one. There are documented cases that link people with autoimmune disease to environmental pollution and prescription drugs, but genetics can also highly play a role here as well. One viewpoint on autoimmune diseases calls it finding “the perfect storm.” Meaning, when a person’s body experiences their own perfect storm of genetics + environment + medications + nutrition = autoimmune disease outbreak within.

One of most frustrating reasons that they are hard to diagnose is that many, many doctors still don’t fully understand autoimmune diseases and there are some, yet still, who don’t really believe in their existence fully. Most people with autoimmune disease diagnosis have seen multiple doctors to try and figure out what’s wrong with them before they are able to finally find a doctor who believes them and doesn’t think they are “making things up.” To get an idea of what this is like, I can’t describe it any better than this article from The New Yorker called “What’s Wrong With Me?” It describes, so closely, what I went through and what I continue to go through as an autoimmune sufferer. Please, take the time to read this, especially if you know someone with an autoimmune disease. This will give you such a greater understanding of what they’ve been through and what they continue to go through.

You see, most people with autoimmune diseases “look fine.” Meaning, we don’t have any outward characteristics that are easy “tells” for our illnesses. Because of this, many people have a hard time believing us when we mention our symptoms and how we are feeling on any given day, because nothing can be wrong with us… we look fine. Top that off with the fact that we don’t want to burden anyone with how we may feel, so we’ve gotten really good at “faking it,” and with overcoming it. Ask us how we feel and we’ll likely reply, “I’m fine.” Those with autoimmune diseases are some of the strongest people I know because of this very reason.

The truth is, we really don’t want pity either, as we fight every day to learn how to live with our diseases and learn what we can do, lifestyle wise, to ease the burden of the disease itself. What we do ask, though, is for a greater understanding of autoimmune diseases in general, as well as how they affect our daily lives. We also hope that you’ll understand what we may be like when we are experiencing an autoimmune flair up and to be kind and understanding with what we are going through. Sometimes we may not be thinking as clearly due to brain fog, we may have trouble finding words, we may not want to go out due to extreme fatigue or bodily pain, or we may feel anxious or depressed. Mostly, though, we just want you to believe us when we mention what we are experiencing, and not to brush it off as “all in our head” simply because we “look fine.”

These are the faces of autoimmune disease sufferers. We are all beautiful people fighting every day to live normal lives, and we are succeeding at it pretty well, I’d say, because you can’t tell what we have by looking as us, can you?

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Those pictured above suffer from an array of autoimmune diseases including, but not limited to: Hashimoto’s Thyroiditis, Vitiligo, Fibromyalgia, Interstitial Cystitis, Celiac Disease, Pressure Urticaria, Crohn’s Disease, Psoriatic Arthritis, Sjögren’s Syndrome, Scleroderma, Lupus, Lichen Planus, Raynaud’s Disease, Rheumatoid Arthritis.

(Thank you to the friends who let me share your photos, and also to those whose photos I wasn’t able to fit into the collage.)

Don’t know what all of those autoimmune diseases are? Are there some you’ve never heard of? You aren’t the only one. Learn more about autoimmune disease, and the variations thereof, at https://www.aarda.org

… and please, read this article in The New Yorker – “What’s Wrong With Me”

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