Autoimmune disease: Yes, it’s real

It’s maddening when you know what’s wrong, but no one will listen to you (or if they do, you feel more humored than believed). It’s soul-crushing when the result is your life becomes a daily “what can I manage today,” instead of the wide road of possibilities it once was.

That’s what autoimmune disease is like. And it’s permanent; once set in, it’s about management more than cure.

March is Autoimmune Awareness Month. Perhaps you recognize some: Multiple sclerosis, rheumatoid arthritis, inflammatory bowel disease. Others are less understood and poorly managed, even in the medical community, such as POTS (postural orthostatic tachycardia syndrome), lupus and Graves disease.

Now we can add a surprising one to the list: Alzheimer’s. Once believed to be caused by some kind of brain-damaging protein, Alzheimer's is now considered more likely an autoimmune issue than a brain disease.

Up to 90 diseases and conditions are thought to have autoimmune links, and it’s getting worse. The American diet, with its poor nutrition, food additives, and toxic chemicals banned in other countries, is exacerbating the rates at which we are developing complex health problems.

Before 2022, “autoimmune” wasn’t part of my vocabulary. It seemed a vague concept, something to do with chronic conditions whose sufferers were tolerated at best. At worst, they were doubted and dismissed.

That’s because the main feature of autoimmune conditions is inflammation. Reacting to some kind of change, the body attacks parts of itself it shouldn’t. Inflammation results, but that tends to be deep inside at the cellular level, so it’s generally invisible to others.

Awareness dawned when a close family member and I suddenly got sick. It started with simple, shared virus symptoms, but over the next few months it became like a cascade failure of multiple body systems. 

Between us we lost 50 pounds in a matter of weeks. Swallowing was hard. Pressure in the chest and shortness of breath made exercise impossible and walking difficult. Nutrients weren’t absorbed, leading to other strange symptoms. Blood pressure suddenly shot up to require meds, or dropped to the point of fainting.

Chest pain, tachycardia, sudden-onset tinnitus, brain fog, you name it. All. The. Time. Sleep became a distant memory.

A year and countless tests and experts later, despite finding a plethora of “little” things and blood changes (which should’ve been a clue), no good answers. Medications which worked before this illness no longer had the desired effect. A mystery.

Doctors out of ideas started pointing to stress. Well, sure. Being sick without explanation tends to do that, and yes, stress reduction helps us all. But stress didn’t cause that initial virus and stress didn’t cause two family members to have the same bizarre symptoms at the same time.

When you don’t recognize your own body anymore and you suddenly feel like crap all the time (from normal to this mess in a couple of weeks) and no one seems to believe you after the tests fail to give answers, it’s enough to make you crazy. And lose hope.

Until, after a year, two doctors finally pegged autoimmune disease. And at least we got something to work with.

Being believed is a big part of the experience. My sister-in-law has severe lupus. It took years before any doctor took her complaints seriously and by then, it was too late to do much about it. She has neurological problems, lost all her hair, and has serious organ dysfunction.

Throughout all this we got a lot of “you look fine.” I was averaging one to two hours of piecemeal sleep thanks to pain and a racing heart. I lacked the strength to cut a cucumber. But hey, we looked fine. So we must’ve been fine.

Soon enough if anyone asked, I simply said, “I’m fine.”

When Western medicine failed, we spent months and thousands on naturopaths, acupuncture, and oriental medicine. We tried, but it didn’t help much. No magic supplements, diet, or routines “restored the balance.” Do I think alternative medicine can help with symptom management? Sure. But in this case at least, it’s not a magic cure.  

Wow, do I finally get it.

Autoimmune is like a festering secret. Internal inflammation attacking cells is mostly invisible, potentially life-altering, and often unaddressed. It can also be very lonely. Not for a moment will I ever think someone who says they struggle with something chronic “looks fine.”

Two years and a few surgeries later, one preventable had it been noted sooner, doctors believe the multiple conditions between us amount to autoimmune diseases triggered by long COVID. 

Today, it’s good days and bad. We can eat, although what and how we eat matters more than it used to. I get up to four hours sleep on a good night (still in pieces) and I can chop veggies again. Brain fog happens less, although I can no longer handle crowds and noise; it feels like electric shocks all over my body. 

I’ve learned how to better manage things, but pain is still constant and exercise, problematic. My young family member is in worse shape, their life much more changed by the effects of an autoimmune disease and a newly triggered genetic one.

Autoimmune conditions do that: They can cause or trigger other diseases and problems. It’s an immune system malfunction, like a programming change that makes the body attack itself.

I’m not accustomed to writing about myself and I sure didn’t want to this time, but my hope is to increase compassion for others. The up and down, the hard-to-pin-down mysteries, the chronic pain, the poor and underinformed medical response at least initially, that’s typical for autoimmune conditions. Greater understanding breeds better human relations and ultimately, better science.

You learn to live with whatever life brings, and with autoimmune conditions, you learn to keep it to yourself. That’s OK. Where we could do better is common knowledge. Improving the effects and treatment of autoimmune disease begins with others:

Being believed. Not being dismissed. Getting a doctor who wants to help you figure out how to identify, mitigate, and what triggers flare-ups. Having loved ones with the capacity to support, so you don’t necessarily have to swallow the struggle in silence so you’re not a constant drag.

What can you say to be supportive? I believe you. I see how hard you’re trying. What can I bring to help (food can be tricky)? Please be patient with our limitations.

Thanks for reading this uncharacteristically personal column. If you know someone with an autoimmune condition or you have one, I hope it was helpful.

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Sholeh Patrick is a columnist for the Hagadone News Network. Email sholeh@cdapress.com.