I have been publicly talking about autoimmune diseases for over 10 years now, and one of the biggest things I’ve learned is how little people know about them. To that end, especially with more and more people getting them, I thought it was time to talk about some autoimmune disease basics. That’s right – let’s talk about what no one tells you about autoimmune diseases.

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What No One Tells You About Autoimmune Diseases

What is an autoimmune disease? 

Hey, we got to start at the beginning!

The National Institute of Health says that “if the immune system malfunctions, it mistakenly attacks healthy cells, tissues, and organs,” which is an autoimmune disease (x). As I say it, my immune system is broken and mistakenly attacks my body.  

Autoimmune diseases can destroy body tissue, cause abnormal growth of an organ, change organ function, and more (x). Basically, any part of your body can be affected by an autoimmune disease, even if it starts in one specific part of the body.

In my personal experience with my personal autoimmune diseases, not treating the disease from the start can lead to more parts of the body being affected. If my RA had been treated earlier, I wouldn’t have most of my illnesses, and it would (maybe) just affect my joints. Many people think RA only impacts the bones, which is very much not the case.

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What are common autoimmune diseases? 

There are more than 80 autoimmune diseases! (x) But the most common autoimmune diseases are rheumatoid arthritis, Hashimoto’s, Celiac, Graves’ disease, and type 1 diabetes (x). 

Some other autoimmune diseases you might be familiar with are Crohn’s disease, psoriatic arthritis, alopecia, lupus, and multiple sclerosis.

1.3 million Americans have rheumatoid arthritis (x). 

14 million Americans have Hashimoto’s disease (x). 

More than 2 million Americans have Celiac disease (x).

More than 3 million Americans have Graves disease (x). 

1.44 million Americans have type 1 diabetes (x). 

Most people aren’t familiar with what counts as an autoimmune disease, but at the same time, they’re familiar with autoimmune diseases.

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Can autoimmune diseases kill you? 

Absolutely.

I mean, the leading cause of death in rheumatoid arthritis patients is heart disease (x). Cleveland Heart Lab says “people with rheumatoid arthritis have a 50 percent higher risk of experiencing a heart attack, twice the rate of heart failure and more peripheral vascular disease than those without the condition” (x). So while the initial cause of death might be heart disease, the real cause of death could be seen as RA because RA caused heart disease. 

Additionally, if diabetics don’t get insulin, they die (x). This is true of any type of diabetes, including autoimmune forms (Type 1 and Type 1.5).

I could go through all the different ways autoimmune diseases can kill people, but these are 2 key examples. RA is an example of how an autoimmune disease can cause other things that directly kill, and type 1 diabetes is an example of an autoimmune disease that directly kills. 

Finally, in general, autoimmune diseases “are one of the top 10 causes of death in women” (x).

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How do you get an autoimmune disease? 

There are a few different possible causes of autoimmune diseases, but no one knows the exact cause of autoimmune diseases in general. 

Johns Hopkins says, “When the body senses danger from a virus or infection, the immune system kicks into gear and attacks it. This is called an immune response. Sometimes, healthy cells and tissues are caught up in this response, resulting in autoimmune disease” (x). One example of this is the connection between strep throat specifically and psoriasis and rheumatoid arthritis. In this instance, “after having strep throat, people develop psoriasis, an autoimmune condition that causes patches of thick, scaly skin” (x). 

The thing is that there are so many different autoimmune diseases and some things cause one autoimmune disease more than they cause another. 

For example, often one racial background is more connected to some autoimmune diseases than it is to different autoimmune diseases. healthline says, “White people from Europe and the United States may be more likely to develop autoimmune muscle disease, while lupus tends to occur more in people who are African American, Hispanic, or Latino” (x). 

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At the same time, you are much more likely to have an autoimmune disease if there’s a family history of it. You can find sources for this from Johns Hopkins, Boston Children’s, Yale, everyone, etc.

Autoimmune diseases run in both sides of my family – and it’s not just autoimmune arthritis. On my dad’s side, we have people with at least 3 different autoimmune diseases, and if we count each autoimmune disease individually, that’s 5 autoimmune diseases total, as I have at least 3. On my mom’s side, it’s the same thing: at least 6 different autoimmune diseases are represented, with me providing 3 of them. 

Finally, I would be remiss if I didn’t mention that you’re more likely to have an autoimmune disease if you are assigned female at birth (x). The Global Autoimmune Institute explains, “Factors that differ between sexes like the additional X chromosome, certain hormonal changes, reproductive function, immune responses, effects of environmental agents, and organ vulnerability could all have a hand in the higher autoimmune disease prevalence in females” (x).

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Why do autoimmune diseases develop? 

The Cleveland Clinic says, “Experts don’t know why your immune system turns on you. It’s like it can no longer tell the difference between what’s healthy and what’s not — between what’s you and what’s an invader. There are some theories about why this happens, but experts aren’t completely sure” (x).

One thing we do know, though, is that if you are predisposed to autoimmune diseases, you might develop one after an infection, as I just mentioned.

Johns Hopkins says, “When the body senses danger from a virus or infection, the immune system kicks into gear and attacks it. This is called an immune response. Sometimes, healthy cells and tissues are caught up in this response, resulting in autoimmune disease” (x). Essentially, you get an infection and your body responds to fight it … except it over-corrects and includes healthy tissues and cells in its attack. 

Check out my tips for describing your pain to doctors here.

And, yes, this can happen after COVID! The Global Autoimmune Institute says, “SARS-CoV-2 virus is associated with autoimmune disease in various ways, although researchers are still investigating the relationship. COVID-19 infection has been reported to trigger cases of Guillain-Barre syndrome, antiphospholipid syndrome, lupus, and other diseases” (x). 

Unfortunately, this can also happen after getting cancer, which is just rude. Ana-Maria Orbai, M.D., M.H.S., says, “‘The thought is that when the immune system gets rid of the cancer, there is a leftover inflammatory response because of that fight,’” (x).

There is also ongoing research into if a similar thing happens when some people have repeated injuries to the same area. 

Research has shown that in parts of the body subjected to high stress, an autoimmune response happens after damage to tendons, which attach muscle to bone. “This repeated stress can expose tissue that shouldn’t normally be in contact with blood cells,” says Orbai. “When that tissue gets exposed, it’s like a small wound. Blood cells try to heal it, but an abnormal immune response causes inflammation of the joints and tendons.”

Johns Hopkins

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How can you prevent autoimmune diseases? 

It’s not precisely preventative, but there are risk factors for autoimmune diseases that you can avoid. The Cleveland Clinic says that some risk factors include smoking, exposure to toxins, and having certain infections (x). Yale’s School of Medicine says that autoimmune diseases “can be triggered by environmental factors and stress” (x). 

Some of these environmental factors include smoking, as well as “Exposure to other toxins like air pollutants, crystalline silica, ultraviolet radiation, or organic solvents” (x). While obviously it is not always possible to avoid exposure to these things, if you can limit it, you can reduce your risk. 

Finally, in addition to the fact that getting an infection can trigger autoimmune diseases generally, there are also specific types of them that are triggered by infection. For example, reactive arthritis is “joint pain and swelling triggered by an infection in another part of the body — most often the intestines, genitals or urinary tract” (x). 

Again, while you can’t necessarily prevent autoimmune diseases, reducing your infection risk can reduce your chance of getting an autoimmune disease triggered by infection.

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Can you cure autoimmune diseases? 

Despite what commenters on Instagram will tell you, no (x). With some conditions, though, it is possible to go into remission.

Remission is when “you have minimal or no symptoms,” but it is not a cure (x). With RA at least, you can have medical remission, which is having minimal or no symptoms while taking medication. Some people go into full remission, which is minimal or no symptoms to the point that you can go off of medication. I assume that applies to other autoimmune diseases, too, but I’m not sure which ones or how many it applies to. 

Basically, don’t assume it’s possible. 

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What autoimmune diseases qualify for disability? 

This answer really depends on what “qualify for” means. Does it mean “Are you disabled if you have an autoimmune disease?” Then, yes. Does it mean “Do I qualify for receiving disability from the federal government?” The answer to that is trickier. 

You can learn more about the different mods of disability here, which can help you determine if the specific condition you’re thinking about falls under the “disabled” umbrella (which is probably yes). 

As for “receiving disability from the federal government,” yes there are autoimmune diseases that qualify. I’m not going to list them all, but you can check the US government’s list here for SSDI. 

SSDI is Social Security Disability Insurance and SSI is Supplemental Security Income. SSDI is for “if you have a disability and worked enough years to qualify and paid Social Security taxes,” while SSI is for “if you are 65 or older or have a disability” (x). Qualifications for SSDI include having a disability on the list and how long you worked and paid into social security (x). Qualifications for SSI include being 65 or older OR having a disability on the list, and for those “who have little to no income” (x). 

I have never applied for SSDI or SSI, so I can’t speak to the experience of applying for them, but I can confirm that we don’t automatically get money once we become disabled. We do have to apply for it, you do have to qualify for it, and often you have to repeat the application multiple times to be approved.

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How are autoimmune diseases diagnosed? 

This really, really depends on the disease. After all, there are over 80 of them!  

Many of them have tests, but some are more straightforward than others. An RA diagnosis, for example, has a very different test than Crohn’s disease, which requires a colonoscopy and/or endoscopy (x). I mean, you don’t get a colonoscopy if you’re trying to diagnose a bone disease (unless you think the person has colitis as a result of RA). 

This is also what makes it difficult to diagnose them; there isn’t one doctor for all autoimmune diseases. But let’s talk about the diagnosis process for common autoimmune diseases – all with the assumption that you already have symptoms of these diseases.

Rheumatoid arthritis has a rather convoluted path to diagnosis. Some blood tests that doctors will run include ESR and the C-reactive protein, which check for inflammation levels (x). They can also check your rheumatoid factor, but only half of RA patients test positive and 1 in 20 people without RA also test positive (x). Finally, they will also do x-rays and maybe MRIs to get an idea of what your joints’ current status is (x).

You can read more about how different autoimmune arthritis patients were diagnosed here, and you can learn more about seronegative vs. seropositive RA here.

Hashimoto’s disease is diagnosed by checking for hypothyroidism and then for antibodies to see if Hashimoto’s is to blame for the hypothyroidism (x). Blood tests for hypothyroidism include TSH and T-4, which are for thyroid stimulating hormone and thyroxine respectively (x). If those are positive, doctors will run antibody blood tests to check for thyroid peroxidase, among other antibodies associated with Hashimoto’s (x).  

Celiac disease is diagnosed by blood tests and biopsies. BUT make sure you’re still eating gluten when these tests are done! If you aren’t eating it anymore, you won’t test positive (x). The antibodies they’re looking for are similar to the ones already mentioned in this post. The NIH says, “Blood tests can show levels of certain antibodies that are often higher than normal in people who have untreated celiac disease. Blood tests may also show signs of health problems that could be related to celiac disease, such as anemia” (x). 

There are a couple of different biopsies taken for celiac diagnosis. GI biopsies are done by upper endoscopy, and pathologists will look at your small intestine (x). Your doctor might also order a skin biopsy “if you have a rash that could be dermatitis herpetiformis,” which is a sign of celiac disease (x).

Graves’ disease is diagnosed in a similar way to Hashimoto’s. Doctors will order blood tests to look at TSH, but in this case, they’re looking for lower-than-normal levels (x). But they’ll also look at your iodine uptake, as well as imaging to look directly at your thyroid (x). 

Type 1 diabetes is often diagnosed by “the random plasma glucose (RPG) test” which “measures your blood glucose level at a single point in time” (x). They might check your A1C to see how long you’ve had high blood glucose levels (x).

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Why are autoimmune diseases increasing? 

Honestly, a lot of people are going to hate this, but the short answer is COVID. 

As I said before, infections and viruses are common triggers of autoimmune diseases, regardless of how severe the virus is. So there are people who got COVID itself and that triggered autoimmune diseases.   

But the other thing is that there is burgeoning evidence that COVID negatively impacts your immune system and makes you more susceptible to other viruses and infections afterward. A study published earlier this year found “that SARS-CoV-2 infection damages the CD8+ T cell response, an effect akin to that observed in earlier studies showing long-term damage to the immune system after infection with viruses such as hepatitis C or HIV” (x).

In that case, there are people who got COVID and then were more susceptible to other infections and one of those triggered an autoimmune disease. 

One reason for increasing autoimmune diseases recently – which isn’t necessarily directly related to COVID – is that things like colds and step throat have been really bad in the last year or so (x). For example, there’s a really bad version of strep going around, and strep specifically is something that triggers autoimmune diseases. 

The percentage of people poised to get autoimmune diseases based on genetics and other factors is the same; there have just been more people experiencing triggering events than before. The WHO says that “there have been 768,237,788 confirmed cases of COVID-19” total (x). If the world population is 8,005,176,000, that means that 9.596% of people have had COVID. One study suggests that 5.49% of people have gotten COVID more than once, and that is a group of people experiencing 2 or more autoimmune-triggering events in the last few years. 

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